One Year Down. I Think.

Friday the 21st of April was my 1 year “anniversary” of my first cancer surgery.  Today is the first of many rounds of doctor’s visits and tests to mark the date.  I say the anniversary of my surgery instead of being cancer free because I am not sure when you are really suppose to start thinking that way.   I certainly wasn’t cancer free after my first surgery. And if I was cancer free after my second, then why all of those treatments?  And why put me on a five year treatment plan if everything is honky dory.  Oh, I know…you are thinking “Don’t be so paranoid!”   I can handle that.  But I also can tell you if you weren’t the one with cancer…..

After a year, sometimes I forget.  Sometimes, but not for very long.  There are too many constant reminders.   The shrinkage of my right boob for one.  The scar is rather hidden, oh but I see it every day.  Sometimes I still have random pains.  And then there is the changes from the anti-cancer drug.  Those are the worst! Hot flashes, zero sex drive, and the inability to lose weight. Okay, I made that last one up, but hey a girl has to try.

So today I am ready to see my oncologist and have a list of questions.  I don’t have much hope of having any real answers because well, because this is cancer.  Cancer has no answers really.  Until a cure is found we really are all vulnerable.  Cancer is the gift that keeps on giving. Seriously, Cancer Really Sucks.

The Watched Pot

When I started this blog it was a way for me to not only work through what I have been thinking but to keep others informed of my progress through cancer.  I blogged pretty regularly because so much was going on from week to week.  It has now been three months since my last radiation treatment and three months since I started the “anti-cancer” pills.  Along with that milestone, came a visit to my oncologist.

I didn’t really dread seeing him…although walking into the cancer center brought back a little bit of nerves.  I was really ready to tell him that the hot flashes were better and life was getting back on track.  While he was glad to hear all that, he kept bringing up the results of some genetics testing.  Since I don’t have children, I wasn’t very interested.  Until it sunk in that he was talking about something that applies to me.

Hereditary Diffuse Gastric Cancer Syndrome, or CDH1 is my diagnoses. What does that mean?  It means I have to be screened for stomach cancer.  I went to an internist the next day to discuss all of this.   So more cancer tests are scheduled for a couple of weeks, all around the same time I need to have another mammogram and ultra sound.  Honestly, all of this was so much of a shock.  I thought I was done. Over. Finished.  Life goes on. Let me paint a door.  All of a sudden I am back on hold.

Both my oncologist and internist let me know that I have an increased potential for the cancer returning….if it’s not there already (seems I have a few indicators with the whole stomach thing).  Breast cancer patients can have the cancer return some place else (this is called metastasized cancer. My new doctor tried to assure me by telling me , “the watched pot doesn’t boil.”  Great.  I just have to live with screenings and tests always?  I am not really sure how to take it all in at this point.

I mean how do you balance paranoia and a healthy amount of concern?

Last week I was ready to paint the house and motivated to get back to “normal’.   Now I am distracted.  It’s not a worry.  Not really.  I guess I have lost my sense of direction or a feeling of what needs to be done.  I know this time, it is going to take until after these next sets of tests.  How many more times or more tests or more news does it take until it is all normal?  Or do I not want it to ever feel normal?

Right now I have a lot more questions than I have answers. This time there might not be any answers.

Painting the Door

Today I painted our front door white.  Well, I did kind of…..it was not as easy as I thought it would be and let’s just say that tomorrow I will be sanding the door and then reattempting to paint the door. You know what they say, “If at first you don’t succeed, try, try again.”

I thought I was going to be okay.  I went to Lowe’s and asked for the kind of paint I needed.  I  bought a cheap brush because who would spend 10 bucks on a  brush when there are perfectly good ones for 1 dollar???  When I got home, I promptly put paper towels on the floor and began imaging how great it would be to finally be rid of that hideous green door.  Hmmmmm, but this paint was different.  It was thick and glossy like the fluffy white icing you use on an Angel Food Cake….not at all like the white creamy stuff I had just painted the fire place with.  Oh, and the smell!  So stout.  I turned off the air-conditioner and opened the windows.  That wasn’t enough! I popped open the screen door too.  That should do it!

Oh but I was wrong.

The first coat went on okay.  I didn’t expect white to cover green right away.  So I gathered up the brush to wash it out in my kitchen sink to be ready for coat number 2.  Ugh! I looked and the paint was washing down the drain?  It was sticking on the sink.  I’ll fix that I thought, and reached my hand to swirl the paint off the sink.  Within seconds I smeared water proof pain all over the sink and all over my hands!  What fresh hell is this?  I reached under the counter and began scrubbing the sink and my hands with comet.  I threw the brush away.

With the air off, the house was getting so hot!  It was nearly 80 degrees by noon.  I decided to eat some lunch because by then, surely the paint would be dry.  Finished, I walked over and touched the door.  Not only was it tacky, it left a fingerprint.  But wow!  It had been like 2 hours???  I picked up the can of paint to read the directions, but a horrible thing happened.  Now both of my hands were full of sticky paint again AND the paint had run over the side and hid the directions.  So, I went back to scrub my hands.

I know what you are thinking?  I am still waiting for it to dry and put the second coat on tomorrow right?  Oh no.  Not me.  I got another brush.  This one was a little smaller but it would do and began to apply the second coat. I cannot even begin to describe the nightmare of a paint job this suddenly turned into!  The paint was glopping on eveywhere! If there was a run, oh and there were runs, trying to fix it only made a big wall of paint glop. The brush was loosing bristles faster than Blue Heeler chasing a rabbit!  I was taking my fingers and trying to pick out all of the bristles and then repaint the whole in the paint my fingers made!  At one point, every finger on my left hand had two bristles each.  I couldn’t get them off my fingers because it was that horrible Fluffy White paint!  And no matter how hard I tried, I could not get rid of all the green that was peaking through the glossy white globs of  paint.  Finally, I finished.  I stood back and looked.  WHOA!  There would be no fixing this???  I mean how?  I didn’t even know that you could paint a door and have that many ridges and hills and runs and glops…not to mention the bristles I had missed!  I don’t even want to tell you how hard it was to scrub my hands and get those pesky paint brush parts embedded into my hands.  I expect I know now why some brushes are worth every bit of 10 dollars.

I texted Darrell and told him the door needed more help than I could give it.  As a matter of fact,  I typed, we probably needed a new door.  Then I closed the windows, left the screen door open, turned on the air, and took a nap.

When Darrell saw it, he said, “yep, you messed that up. We are going to have to sand it….maybe take the door off.  It’s so thick, it might take a few days for this to dry.” Ha! He even tried to take a picture of it to share with his friends, I am sure!  But a picture would just not do this door justice!

But it’s okay because I have time to fix it even if it takes a few days.

Yes, I do have time.  Now we get to the point about what all this has to do with a cancer blog?  I have time. I feel like doing something. I noticed today that I, once again, look around the house and think….I would like to change that. For so long, I just wanted to feel better. Then I just wanted to make it through the day.  It has been 7 months since my life of cancer started and now I know that cancer is not taking over my life.

I may not be done, but I’m not finished…yet.

 

Ring That Bell

Tuesday, August 2, I rang the bell signaling the last of my 35 day radiation treatments.  Normally, the day before the kids come back to class, I would wake up anxious to get everything ready in my classroom. Tuesday, I woke up feeling like it was Christmas Eve.  I was waiting for the gift of finished treatments.  I cannot put into words how I felt watching that machine hum around me for the last time.

Wednesday morning was Christmas Day for me.  I felt so free.  Normally, I am so anxious about the first day of school, I can hardly sleep.  I wake up in the morning with my first thought about school.  For the first time in 21 years, I woke up thinking about me. WOW!  This is the day I begin healing.

Why did it take so long to post about this momentous day in my life?  Because I am tired. I am weak. And I am still feeling that old familiar feeling of fatigue. I give 100% to my kids during the day, but before I even go home, I need to just sit in front of my fan and rest. Today is only the second day of school, and I struggled all day.  My hot flashes are insane. I live in the south, and the temperature is crazy hot anyhow.  With these hot flashes, I can’t tell if it is me or the air conditioner isn’t working.

So what is next? Time to heal. I still have a lot of swelling. I still have a hard lump in my breast that the doctors call something I can’t recall, it sounds so medical. Basically, where the surgeon removed that golf ball sized mass, is now filling with blood and fluid.  They don’t know if it will ever go away?!  Very disturbing to me really. So I am doing what I can after school to get the swelling down and rub out that hard spot. I am still very sore and cringe whenever somebody wants to hug me.

The doctors also switched medicines for the hot flashes. I actually think it may be working. I have less total melt downs than I did, and I seem to sleep somewhat better at night. Although 5 hours of sleep is a blessing. What I try not to worry about is the estrogen blockers they will put me on later this month.  The doctors say this will cause severe hot flashes, lack of sleep, etc. for only a “short time” of a few months until my body adjusts. Yeah, not looking forward to that.

But for now, I celebrate. I know it will take a couple of weeks but I will start to get better now. I am trying to keep my focus on healing. My mind wants to go to: Is the cancer really gone? Will I be able to take that new drug? Will I make it five years without the cancer coming back?

With cancer, it is one step at a time. This is my step to breathe.

 

The Struggle is Real

I just had a twenty minute struggle with my brand new spandex camisole. 20 minutes. I couldn’t get it off!  Home alone and stuck in spandex is not as humorous as it sounds….well not in that moment. I was in full blown panic mode. Exhausted, frustrated, and fearful, I could not cut myself out fast enough. 

Was I wearing spandex trying to be thin? Reshapen the fat? Oh no! I was trying to find an alternative to a bra.  I simply cannot wear one right now.  I’m sore and raw.  I recently named my boob Racheal Dolezal because she’s white trying to be black. Yeah, it’s that bad. 

So I bought a spandex camisole thinking it would secure the girls without gouging into poor Racheal.  It worked okay….but taking that thing off was frightening.  

I know there are places to buy “special” bras, but I’m not ready to spend that kind of money yet.  I’ve got a lot of swelling besides pain so I’m waiting til I heal a little more. 

In the meantime, it’s back to Walmart to try a different brand.  Lesson learned….there is no such thing as LARGE spandex. 

The New One.

This is my new machine.  My last set of radiation treatments will be here. It might not look different to you, but to me, I can tell.  Of course, I am the one laying on the table with all those big beams and arms going around me. It’s all about perspective…pretty much like life.

I am glad and a little scared of this one. This targets the tumor spot. My boob and entire right side appreciates the break. The bad news is the target spot is also the sorest spot. I talked to the doctor yesterday. She said the beam is coming in from 3 different angles and is stronger. Yikes! Poor boobie.  The whole process reminds me of what you say when you see a big spider, “Kill it! Kill it with fire!”

Soon this phase will be over. The doctor said they will leave me alone again to heal before going onto the next phase of this journey. They say time heals all wounds. I don’t think that applies to cancer. Just sayin…….

 

I’m Not Done

I’m not done, but I am finishing up with the first stage of radiation.  I say goodbye to the posted machine today.  I have spent all summer on that machine…yes, 2 months.  I can’t say I will miss it. I know my very “angry looking” boob will not miss it either.  Besides being zapped every day, this machine has also x-rayed me weekly. I heard one of my Cancer Buddies, at the Cancer Center, tell me that the doctors checked her for radiation levels. Not very surprising to me at all.  I really want to go to Home Depot and see if I can’t find such a device to do my own.

But today is special. Not only do I get zapped by this bad-boy one last time.  I get to travel to 2 new machines.  One will x-ray to make sure they have the right set-up for the new machine.  The new treatment will take place just to target the spot where the cancer was removed.  While the rest of my side will get a break, I imagine I will have some intense burning on that one spot.

I also will see my oncologist today.  I haven’t talked to him since radiation started.  Oh, I have seen other doctors….the ones that over see my radiation.  But my oncologist is the man with the plan.  He will tell me what my last set of labs (nice way of putting the 10 viles of blood they drew from me last time) have told him. I know I will be on some sort of after cancer pill. I have lots of questions for him too.

Honestly, I have my doubts about really wanting to go any farther. I already know these pills have horrible side-effects.  I just want to be and feel normal again.  I don’t want feeling bad to be my new normal.  I don’t want to not be able to sleep.  I don’t want to have hot flashes so bad that I feel like I am melting (and these are beyond the hot flashes I had before I went on the killer-cancer-causing-hormones). I know the pills will make that worse. Oh, I know they can give me something to relieve the side effects.  Or so they say. Nothing has worked so far. This guy has got to have some answers for me!  You know I am a fighter, but I have to know I will win.

I thought about writing this post after I saw the doctor. But I know that I will be so tired after my treatment I will just want to sleep. Yesterday, I had to stop and get something to eat on the way home because I could feel that feeling coming on so quickly that all I wanted was the couch, with a fan blowing directly on me!

Do I worry about going back to work with school starting next week?   I changed my treatments to the late afternoon, so maybe this tired feeling will come a little later. And after today, I only have 7 radiation treatments left. Besides, I am tough.  And everyone knows when the going gets tough, the tough get going!  But I’ll be darn if I don’t love my couch until then.

Summer of fun. 

I cannot say this has been the best summer break ever, but I have tried to make the best of it.  My picture shows how I spend every morning.  I get up, drive 30 minutes to the cancer center, change into 2 hospital gowns, and sit in a coed waiting room full of cancer patients like me.  I am called back to the back where two women help me undress from the waist up and lie stretched out on a machine for about 5 minutes while getting zapped with radiation.  35 times. Every day. For 7 weeks.

My boob is still swelled. I still have a huge scar from surgery that I need to attend to every day…I will spare the details.  Now I have a red “angry” looking boob.  I gotta say, I don’t feel very pretty at this point in my life. I am even letting my grey take hold in my hair! The radiation makes me tired and some days I want to stay in bed…..playing the piano takes effort.  I still try to walk every day.  I take vitamins.  What few medicine I was taking had to be changed, so I am working on that. I now have terrible hot flashes. I can’t sleep. Cancer really sucks.  Oh, did I mention I feel guilty?? Yes guilty because I know I am “lucky”.  I didn’t have to have chemo, so I don’t even feel right complaining at all….(and yet see how beautifully I do it here).

This boat anchor around my boob has kept me grounded for the last 4 months and I am tired of it all.  I am tired of the shooting pains, the hot flashes, the tiredness, and cancer in general.  4 months.  And it just keeps going. The next phase is getting on some sort of pill that rumor has it will come with terrible side effects. Shit.

You know what has made me feel okay?  Made me look forward to something? My crazy new Lularoe Leggings!  I have to wear those depressing gowns and show my boobs to whoever needs to see them, but at least we can talk about my leggings.  The focus is not the sorrow of the boob but the buttery soft leggings I am wearing that day.  Flying Pigs, Donuts, Bees, Dragons! YES!  I shop for them in the comfort of my Iphone and it makes me, believe it or not, feel happy and pretty for awhile.  And that for now, is something.    

 

 

Radiate with Radiation

What the crap is up with this?  I learned a long time ago from an English teacher in college to begin your writing with a question to capture interest.  Ha!  That is the only question I could think of to start this blog….because really, as with all things cancer, that is the thought that comes to mind first.

I am still not sure exactly what this radiation stuff is all about. Oh, I know I can research all of this online. I just don’t like to go forward that way because I want to make sure if I have side effects, it is not because I read about it on Web MD…..we all know people like that! After-all there really is no reason to know side-effects ahead of time.  I am already resigned to do this.  I did mention to Darrell the other day that I wasn’t sure.  He was none to happy based on his response.

What I do know is that getting ready for radiation is a process.  Last week I went to set up.  I laid on a machine with my arms stretched over my head.  My arms were molded into this cushy kind of form.  It reminds me of that spray insulation material although I am quite certain they are not using fiberglass?  Or maybe they are?  Who knows.  That took about 20 minutes.  Not really bad, although I would say try laying with your arms overhead like that for 20 minutes.  It is not the most comfortable. (Although I have started Yoga which is so helping with that!)

Oh, I was also marked up with sharpie marker all over the place!  Big X marks covered my sides, my chest I don’t remember how many.  Then the nurses put water proof tape over them and said don’t let them come off until I come back oh 5 days later.  Not the most glamorous look at all.  Really is there any wonder that by this point, I have given up make-up?  Or coloring my hair for that matter.  That grey looks a whole lot better than my torso I can tell you that!

After 5 long days, I was ready to start!  But oh no.  I had to go to the real radiation machine this time. Did I mention they just automatically slap this ring on your feet to keep your feet together.  I am use to it now, but it was pretty weird the first couple of times. I guess it helps keep you still. The nurses let me lay on my non-fiberglass form and marked me up again.  They let the machine do it’s thing without the actual radiation.  When they were satisfied everything was line up correctly….they were ready to tattoo me so I could get rid of those hideous marker spots.  I have to tell you that TATTOOS HURT!  What the hell?  She said that people say that is worse than getting a real tattoo but I can tell you this, I am in no way ever going to find out!  I was jabbed 4 times with what felt like a sharpened ball point pen!   No way I saw that coming!

I also did not know what a wide area would be radiated!  I thought with this new gizmo they implanted would pinpoint exactly where the cancer was and concentrate all the zapping right there.  Apparently not.  Once again, after my first real treatment…out came the sharpies!  The nurse drew a big square box around the whole right side of my torso!  She said they had to zap ALL of my breast tissue on that side….which apparently includes under you arm and partially to your back.  Yep. Same thought came to my mind….”What the crap is up with this?”  I believe that was the night I told Darrell I wasn’t too sure about all of this.

Putting lotion on this big square spot is of mega importance.  I am not sure what the difference is between radiation and x-rays, but after my third treatment, they had to x-ray to make the right spot was getting zapped.  I hadn’t thought of this before then, but an x-ray lasts like 2 seconds…zap. zap.  Am I right?  And the person doing the x-ray goes back behind this protective screen.  I am suppose to do that once a week.  Once a week?  Also, the radiation lasts about 3 minutes.  I lay there with my arms over my head while I watch this machine come up and over me with this red beam of light that stretches across the room.  Of course the nurses are behind a protective wall.  I am quite sure that after several weeks I should be able to turn on lights just by walking by a lamp!

I will do this every day for 7 weeks.  Well unless something happens like a bad burn or infection then they will give you a couple of days to heal..prolonging these every day trips to town.  Right now my appointments are smack dab in the middle of the day.  I will start going earlier in the morning on Friday.  I don’t like for my whole day to revolve around my trips to town.  The whole process is about 1 hour and 30 minutes by the time I drive there and come back.  Every. Day.

I am still forever thankful that chemo was not part of this plan. Even knowing all the damage radiation is causing my body now and in the future is hard enough to handle. I am glad that I started exercising!  My doctor said that will help my body recover and help with the fatigue that is sure to come. I am determined to leave this summer better than I started…which seems really weird for me to say that as I get ready to go get radiated again. Cancer really sucks, but God is going to turn this into making me a better person. Maybe even more glowing than ever before 🙂

 

 

Pros. Cons. Radiation

Let the Radiation begin!  Last week I went to get “marked”, and I have been walking around with 6 big X marks the spot drawn with markers and covered with tape.  Today is my “dry run”.  I go to the real radiation machine where they make sure the marks are correct, and then tattoo me right up so they know exactly the mark every time.  Does Leviticus come to anybody else’s mind? Does this make sense?  Yeah, me neither.

I know I dodged a bullet with chemo. I know that people say radiation is easy and I will be fine.  I know it is suppose to be a little sore about like a sunburn. I know that people think I am fine.  I know that many of those people have gone through this, or worse.  And I know all of those things are probably true.

But it just brings reality right back to me. I have enjoyed my little hiatus of all this cancer stuff being over.  I mean really it is hard to forget getting up seeing these two scars every day, not to mention all the big X marks, but I guess in my head……

I have to go every day EVERY DAY for the next 7 weeks.  Every. Day.  More rules of what to do and what not to do.  A constant reminder that I have cancer. I can’t believe that I don’t have IT even though the tumor was removed. I can’t help but think that IT  will come back….even if 5 years down the road.

I am, however, trying to put a spin on this would be tale of woe!  I am getting some bang for my buck!  While I didn’t have many options for the time of day I need to travel all the way to town and back every day, I cannot let that deter me from my other goals this summer.  I am going to have to drive at least the speed limit to make it to my yoga class after treatment.  If you know me, you KNOW that is a struggle.  I am quite the leisurely driver.  Yoga is fun!

Piano lessons are fun!  This is very fast pace course so daily practice and twice a week lessons are exciting.

My new found love of Lularoe leggings is also bringing me joy!  Who knew that the thought of scoring leggings printed with guitars or animals could brighten my day…..okay if you really know me, you would know that I would be EXCITED!

All in all Cancer Really Does Suck. BUT……IT has increased the realization in me that Life has no guarantees. I probably will be fine.  I probably won’t be one of the people who have those terrible side effects or have the cancer come back.  Probably.  I think my little tattoo will be a reminder that life and good health can be taken away at any time.  Now I really know.  Now I can really live.