Monday, October 30, 2017

The Setback

Things were going all right with the drain and the concept of sleeping on the sofa.  I was as comfortable as possible and I binge watched Northern Exposure which made me happy.  I was tired and a little cranky, but not bad all things considered.  The weekend came and we watched TV and movies and sat around and waited for the end of the drain phase of the recovery.  It was supposed to be in for a minimum of seven days, but my surgeon was busy, so it would be nine days for me.  Fun.  The saddest part was that I was getting used to the routine that was actually a nightmare.

My husband showered me every day and helped me with my hair.  I always wear my hair up in a pony tail, because I'm too lazy to get a hairstyle, and my husband was getting used to putting it up for me.  It wasn't great, but he's a manly man and he did his best.  It wasn't half bad, so I was impressed.  I didn't have any problems eating and the pain wasn't affecting me much; so life was all right under the circumstances.  As I'm sure I've said before; I don't really feel pain in my torso area.

The next issue came on Sunday morning.  I was sitting with my arms out from under my blanket as I slept in the sofa and I woke up in the morning just like I always do.  The problem was that for one brief second, I forgot that I'd just had major surgery.  I did what I do almost every morning of my life.  I sat up straight and stretched my arms.  Not a good idea.  Something pulled free.  I wasn't even sure what it was.  All I knew was that we had a problem.  I yelled, and my husband jumped up.  I was scared to move.  I didn't know what kind of damage I'd done, if any.  I was probably more scared at that moment than I had been before the surgery.  Before the surgery I knew what was happening.  When I stretched, I had no idea and I knew that whatever I'd done, it was in addition to the wounds I already had.

The drain was still in.  There was still a little blood in the ball at the end of the drain tube.  I wasn't hurting.  I didn't know what to think.  Neither did my husband.  We decided to wait.  I didn't feel bad and everything trucked along just the way it had before.  We had some breakfast, had some lunch, watched a lot of TV, and sat around.  Finally, we went to look at the would early in the evening.  There was an enormous swelling where the drain was.

That was it.  We did the one thing that we'd both hoped we wouldn't do.  It was Sunday night and we had to go to the emergency room to get the thing checked out.  I hate going to the emergency room.  I never get answers when I go there.  I always figure that there's no point to going, but I had to give it a shot that night.  I was scared.  So, we packed me up and went to the emergency room.

When we arrived, there was strangely nothing much going on.  I live in a town full of drug addicts and what not, so the place it normally full of all kinds of nut jobs, but this night was not that case.  We got in quickly and I saw a doctor that I had not seen before, so that made me feel good.  The ones that I knew I wasn't too confident in.  He examined me and then went to make a call to the surgeon on duty to ask him what he thought we should do.  In the meantime, my husband and I sat and waited.

Finally, the doctor came back and had talked to the surgeon.  Of course, the surgeon on duty wasn't my surgeon.  Therefore, he didn't want to get too involved.  He said to go home and call my surgeon in the morning.  Great.  Another scary night for me.  I'm never surprised in a good way at my local emergency room.

We packed me back into the car and went back home.  We hunkered down on the sofa and tried to sleep and waited until morning to call my surgeon.

The next day was Monday.  My appointment was Wednesday.  The nurse was coming to visit Monday morning.  I called my surgeon and the girl told me not to worry about it unless the swelling got bigger, or I had a lot of pain.  I reminded her that I wouldn't feel a lot of pain, so that wouldn't help me.  She said it would be fine and they would see me Wednesday.  Great.  No answer there.

I called the lovely lady who had been designated as my Breast Cancer Navigator.  She listened to me.  I liked that about her.  She always listened.  She said to call her when the nurse came to check on me and that they would discuss the matter.  Sounded good to me.

The nurse came and examined my drain and swelling and then she called my Navigator so they could talk.  They discussed everything and then they told me that there did not appear to be any damage to the area.  They were concerned that the drain may have had some blockage, but there was nothing that could be done about that until the drain came out.  They assured me that it would not harm me, so I could wait and go to see the doctor for my appointment.  I was satisfied at that point, because at least they had examined me and consulted before giving me an answer.  Both of them were nurses with a lot of experience with mastectomies, so I believed what they told me.

The nurse completed my visit and went on her way.  Then all I had to do was wait for the appointment when the drain was supposed to come out.  I was nervous.  I didn't know what would happen next.  All I could do was sit on the sofa and watch some more Northern Exposure.

Sometimes you learn as you go.  I thought that when I heard that I had cancer that was the scariest thing I'd ever heard.  I then thought that having my breast cut off was the scariest thing I'd ever heard.  Waiting is the scariest part.  Waiting is the one thing that no one ever wants to do and no one ever really knows the outcome of.  I was more scared at the point that I had to wait than I was when I knew what they were going to do.  The last two days of the waiting after the surgery was worse than the surgery itself.  I never knew I could feel that way until then.  It was the first time that I'd truly been scared and that I'd wondered if I'd made the right decision.

Next, when I get a chance to write that is, I will tell you all about what happens when something goes wrong with a drain after a mastectomy.

Wednesday, July 5, 2017

The Longest Week Ever

From January 25th to February 1st me and my husband lived on the sofa.  I could barely move.  Not because of pain, mind you, but because the drain out my side was so abnormal feeling.  If I moved, it pulled and it just felt awkward.  I can't explain it any better than that.  We had to drain it every few hours.  This process consisted of uncapping and draining it, as well as making sure there were no blockages in the tube that ran from my wound to the collection ball.

That went fine for a day.  Then it ended.  I barely had any drainage.  We emptied it less and less.  A visiting nurse came to visit and helped my husband learn how to help me shower.  She checked the drain while she was there.  We all knew that something wasn't right.

First, the shower.  My husband wasn't sure that he was ready to see my wound yet.  I mean, that made sense.  He was used to seeing a woman with two boobs, and now he was going to see a woman with one boob and a 20 centimeter gash across her chest with a hole under her armpit and a tube coming out.  Shocking is a mild term to use for that.  So, on the nurse's first visit, he asked if she could help me with my shower, because he wasn't ready.  No problem.  I hadn't been ready to see it either, but I had.  It didn't bother me nearly as much as I thought it would.  But I understood.

He followed us to the bathroom even though he'd said that he wasn't ready to look yet.  He ended up seeing the wound as the nurse helped me shower.  Fortunately, it wasn't as bad as he'd thought it would be either.  He was relieved.  I was relieved that it hadn't shocked him much.  From there, the nurse showed him what to do to help me, and he seemed comfortable with the process.  I was happy.  I would rather have my husband help me shower than a stranger.  No offense to the nurse.  She was great.

From that point on, my husband would help me shower and would drain the drain, and change the bandages.  The problem was that drain.  It didn't seem to be draining.  My breast cancer navigator talked to the nurse on the phone.  They thought that it was all right, and that it may just be ending.  Call me a pessimist, but I didn't believe that for a second.  I knew that this wouldn't be that easy.  Nothing was ever that easy with me.

It was decided that we would continue to use the tube top that they called a binder to put pressure on the drain tube and hopefully everything would be all right.  We called the surgeon's office and the consensus was to just let it be with the binder and everything would be all right.  Call me a pessimist, but it seemed too easy.

I watched Northern Exposure a lot.  In just over a week, I watched all six seasons.  It was what I wanted to do, so that was the one thing that was making me happy.  The rest was tedious.  I had trouble moving.  It didn't even hurt.  I just couldn't move much.  The body just wouldn't go.  There didn't seem to be anything I could do about it.  My husband had to help me up from and back onto the sofa.  I navigated the stairs to the bathroom and back all right, and I could get a bottle of water from the kitchen.  That was about it.

My husband had to go back to work at some point.  So, the solution was to set me up like a cat who's family was away on a trip.  I couldn't lift diddly squat, so my husband and son put 20 ounce bottles of water flavored with my Crystal Light in the refrigerator.  They left enough bottles to get me through the day so that they could go to work and school.  I also had single serving containers of soup and stuff that I could heat in the microwave for lunch.  Then when the boys came home from their day, they continued to take care of me.  It was an interesting system, but it worked.

Let me interject here what happened.  My aunt and my mother in law were supposed to help take care of me, but they both got very ill.  Best laid plans and all of that.  They both came down with similar viruses at the same time, and they couldn't be around me, because no one wanted me to catch it.  At the same time, my mother lives in Arizona and can't travel anymore.  On top of everything else, 6 days after my surgery, my mom broke her arm.  Then I felt bad because I couldn't go out there to help her.  It was just one mess after another for a while.  Fortunately, everyone survived and got better.

So, every night at bedtime, my husband would tuck me in with my blanket on the sofa and then make himself as comfortable as he could.  He falls asleep on the sofa all the time, so it was actually easier for him than it was for me.  However, he would have to get up and help me every time I woke and had to go to the bathroom or whatever.  Life was not easy for him.  He didn't complain.  He kept telling me that it was worth it, so that I would not die on him.

My husband had worried a great deal about me during this mess.  He told me that he'd taken me for granted and that he never wanted to do that again.  Cancer scared him.  In all the years I've known him, this was the only time that I recall him really being scared about what could happen. He'd been frightened during our son's birth, but that had been momentary.  This worry had continued on for months, and the pathology hadn't come back yet.  We still didn't know for sure that it was over.  There could be more and we were just waiting to see.  There could still be radiation, chemo, and maybe more surgery.  Add it all up, and it was one of the longest weeks of my life.

The week wasn't over yet.  I will stop here and talk about the rest of it soon.  I will have to say, nothing gives you the opportunity to work on a relationship more than a crisis.  Lots of couples fall apart during a crisis.  Me and my husband became closer.  We realized during that time that we had each other and with our families getting older and becoming ill themselves; we were lucky to have each other.  If I hadn't had him during that time, I don't know what I would have done.  He was a great nurse.  He was more patient than he ever was before or after that time.  It's amazing the people we can be when we reach down inside and pull out our best.  After all John Lennon said it.  "All You Need is Love."

Tuesday, June 13, 2017

Then It was Time to Go Home...

Insurance and doctors got together at some point in time and decided how long a mastectomy patient should spend in a hospital, and now the rest of us get to live with that.  It's funny how a bunch of bureaucrats decide how we feel and when.  I always wonder what would happen if the CEO of some insurance company's wife had complications with a mastectomy.  I bet there would be some changes, so if there ever are changes, we can rest assured that's what happened.  Fortunately, I am the toughest woman in the world, so the idea of going home after two nights in the hospital was fine with me.

I woke up that third morning to someone trying to get blood from me again.  I asked for a phlebotomist, so that I could have some part of my body left that didn't have a bruise on it when I went home.  A phlebotomist came and she was very nice and extremely effective.  Nurses for some reason have lost the ability to draw blood.  I blame it on the tendency for the medical profession to continually specialize more and more to the point that I have to see 12 different doctors a year for not much.  I'm an old woman and I can remember when you just went to see your doctor on most occasions.

I have to digress here for just a minute.  I'm reading a book by an online friend and famous adventurer, Charley Boorman.  The book is called Long Way Back, which is a title formulated from his series Long Way Down and Long Way Round in which he and Ewan McGregor ride their motorcycles from Scotland to South Africa and around the world respectively.  The book is about Charley's recovery from a heinous motorcycle accident that he was in last year.  He lives in London, and he had the accident in Portugal.  I was surprised after hearing how awful our healthcare is compared to most of the rest of the civilized world, that Charley had some horrific problems with the bureaucracy in Europe.  If you ever wondered what goes on in the rest of the world with this problem, that book is one good example.  Charley is feeling much better now, by the way.

So, back to my odyssey.  After my blood was taken from me, I got up and around a bit.  I had breakfast and the physician's assistant came to see me again.  She said that the drain seemed to be working again and that I could go home.  Great!  I wanted to go home, even though there was no CBS there to watch.  I wanted to get started on my list of activities that I had planned, starting with rewatching the television show Northern Exposure.  I had all six seasons on DVD.  All I had to do was take a shower, which was becoming extremely necessary, and put on some clothes.  How hard could it be?

My loving husband decided that it would be best if he left while the nurse helped me with my first shower.  I agreed.  So I went to the bathroom with the nurse and went about trying to shower with that ridiculous drain tube and collection ball hanging on a lanyard around my neck.  At that point they had removed the Lidocaine  ball and the drain was the only unnatural appendage that I had left.  Seemed reasonably balanced.  Lost a natural piece, gained an unnatural one.

I opted to  not look in the mirror that was next to the shower.  The one thing that I believed I was not ready for was seeing the wound where my breast had once been for the first time.  I was doing really well with everything.  I'd had no pain killers, except for a little Tylenol.   I've always been good with pain.  I've always been good with changes in my appearance.  This, however, seemed like quite a stretch, and I just wasn't sure what I would think when I saw it for the first time.

I jumped in the shower, and it wasn't that bad.  The drain felt weird every time you so much as touched it.  That threw me at first.  I washed myself, but I didn't look at what I was washing.  Looking back, it seems silly, but I was scared to look.  I mean, this event caused the formation of several agencies, foundations and so forth.  It caused the world to look at the whole subject differently.  This event changes the lives of so many women so dramatically that now the whole world looks at it differently.  I'd been advised to join a support group and have reconstructive surgery to help me with this adjustment.  All of that considered; yeah, I was scared to death to look.

So, the inevitable happened.  I stepped out of the shower and didn't think.  I immediately saw myself in the mirror.  I was shocked.  It didn't look that bad.  My surgeon did a great job, and it didn't look nearly as bad as I'd imagined.  I'd done all of the worrying for nothing.  I suddenly realized that I was going to be all right.  I suddenly had the cloud of worry that had been hanging over my head dissipate.  I new it was going to be a relatively long road, but I knew that it would be all right.  I took a deep breath, and the nurse apologized for me seeing the wound when I hadn't wanted to.  I told her it was fine.  It was all fine.  I felt good about it.  Well, as good as I could feel about it, but way better than I'd thought I would.

I put on the special shirt that my navigator had given me, the binder to help the fluids flow, bandages, and sweats.  I was ready to go home.  I had my drain and ball in my special pocket for the trip home and was ready and able to go.  The nurses escorted me to the door in a wheelchair as we all know is the custom.  I got in the car and my husband drove me home with instructions on how to take care of everything for the next week.  At that point, the drain would come out and I would heal.  It seemed like the worst was over.  There were a few bumps along the short six block trip from the hospital to my house, and each one made me cringe a little because of that stupid drain, but the drive went well all things considered.

Of course, when I got home I discovered that the adventure had only begun.  My idea was to go home to a pile of pillows on my bed, climb in, sit back and watch Northern Exposure.  That didn't happen.  I went home, climbed the stairs with no problem, got comfortably dressed for the day, and went to climb into bed.  That drain was the most awkward uncomfortable thing I'd ever encountered.  It didn't hurt, but it got in the way.  When it got in the way it was uncomfortable, like a little pin kind of sticking you in the side.  It wasn't intolerable on a pain scale, but I could not find a comfortable position in my bed to save me life.  I spent about ten minutes there and then went downstairs to try the sofa.

We have one of those dual reclining sofas in the living room.  My husband helped me onto that and helped me put up the foot rest.  It felt way better than the bed.  We had to do some modifying to make it relatively comfortable, but we managed to make it livable.  So, instead of getting to go to bed and watch TV for a week, I would camp out in the living room for a week.  I still had my tiny pillows that the ladies had made for my care package, and they were a Godsend.  I was surprised how those little pillows made just the right amount of difference in my situation.  They were the difference between tolerable and not.  It wasn't what I'd planned, but since October nothing had gone as planned.  At least we were getting through it.

I'm leaving it here for now.  I will tell you what it was like to camp on a sofa for a week.  My husband joined me for reasons that will become obvious as I tell you.  One thing I can say is that no matter how well you plan out a surgery and recovery, be prepared for the surprises.  They are everywhere.  It's like navigating a mine field sometimes.  If you have trouble going with the flow, you will be miserable.  If you can only work by a plan, you will be miserable.  The best thing you can do is to treat the whole thing as an adventure and just go along.  I'm not always the best at that when it comes to events like surgery.  I love to go out and travel and have adventures.  That's why I started Adventures for Anyone.  But, when I'm home, I like my routine and I get uncomfortable when things don't go as planned.  I had a lot to learn and a lot to deal with during this time.  I grew as a person, and I think my husband did too.

I will continue to write the story in the hopes that it helps someone out there deal with things during their own experience.  Remember, get mammograms.  This is curable.  It's not as bad as it sounds.  Get the treatment.  Life is worth it.

Saturday, May 13, 2017

And Then It All Went Wrong Again...

The next morning, we discovered that the drain that as coming out of my armpit was clogged, or at the very least, not draining as well as intended.  We actually discovered it the night before, and the physician's assistant that worked for my surgeon came by to look at it.  There had been a conversation that I didn't completely understand about something called a binder.  I didn't know what a binder was.  They discussed the fact that they couldn't get one until the following day, and then they rounded up an ace bandage for me.

They took the ace bandage and wrapped it around my chest over the incision and where the drain was at.  The idea was that if they put pressure on the drain area, it might make it drain better.  There was a swelling underneath the back side of my armpit from the fluids that were not draining, and it was becoming uncomfortable.  Mind you, it didn't hurt.  It just felt big and in the way.

There were many adventures that came with morning.  Snow was one of them.  It began to snow in the middle of the night and school was cancelled.  Great, that would give my son time to sit around and worry about me.  That didn't make me happy.  I knew that my husband had opted to go to work that day, since I was not home.  He wanted to save all of his vacation time to be at home and help take care of me when I arrived.  So, I could worry about him driving around in the weather.  I could worry that my son would be home worrying about me.  All kinds of wonderful things to worry about.

The next on the list of my worries was the nurse that came in to take some blood.  She tried, but she could not manage to get blood from my veins.  I have horrible veins for extracting blood.  I've had trouble my whole life, and it doesn't seem to be getting any easier with age.  The first nurse caused me a lot of pain, which she felt badly about.  The second nurse got the job done, but it still hurt me quite a bit.  Go figure.  The mastectomy didn't hurt, but drawing blood was horribly painful.  That's just my world.  I'm sure no one else lives in that surreal bit of reality.

The snow stopped.  That was good.  I got to see Live With Kelly, since I had channel 3 for CBS.  The nurses helped me walk around some.  They helped me in and out of the bed because of the massaging cuffs when I wanted to go to the bathroom.  The nutritionist, or whatever she was came in to get my food orders for the day.  The physician's assistant came in to check on my drain.

The physician's assistant brought the thing that they were calling a binder the night before.  I almost laughed when I saw it.  It was a tube top.  Like from the 1970's.  It did have Velcro up the back so that you didn't have to pull it up from your ankles or down over your head, but it was still a tube top.  It had a floral design on it, I guess to make it look cute.  So the whole idea was to Velcro this thing around my chest to put pressure on the drain area and make the fluids come out.  Simple by design, but it seemed that it should be effective.

The binder didn't hurt.  The physician's assistant said that the surgeon would come and check on it for me later in the day.  That all made sense to me.  Everyone then cleared out of my room and left me to rest and watch CBS.

A little while later my breast cancer navigator came in to visit with me.  She brought a whole bunch of surprises.  She had with her a shirt that was designed especially for mastectomy patients that had easy access and a lot of Velcro.  It made it easy for single or double mastectomy patients to get in and out of, change dressings, check things, and it even had a pocket for the drain.  It was pretty cool, and it was made from some of the softest material I ever felt.  Not bad.

The other thing that the navigator brought was a care package designed by a group of ladies that were all breast cancer survivors in a town not far away.  They had all been through my experience, and they got together and designed a kit of sorts that had all the things that would help keep you comfortable for the recovery period.  There were little pillows which I still use, and all sorts of things.  I used almost everything in the kit through the experience at one point or another.  I sent them a nice thank you note down the road a little.  They do great work, and it's all volunteer.  They even make the little pillows.

By the time my mother in law and my son came to visit and brought me cookies, I was feeling pretty good about my situation.  I still didn't hurt, except for where they'd drawn blood.  I'd taken several walks during the day.  I was feeling pretty good, all things considered.  My husband came to visit me that night.  It was nice to see him.  He was worried about me, but I kept telling him that it wasn't that bad.  I'm sure that sounded to him like I was trying to soothe him, but I really didn't feel that bad, all things considered.

One thing that I can say about having a mastectomy.  It's not as bad as you think.  I can't believe I'm saying that, but I am.  By my second night, I settled in for a good sleep and was feeling fine under the circumstances.  The surgeon never came to check up on  me.  The physician's assistant did, and said everything looked fine.  I could still feel the pressure where the swelling was at.  I knew that something wasn't right, but I was too tired to check into it or argue about it.  I had cookies, a good book, and CBS.  It would be all right.

I didn't have any trouble sleeping, so how bad could it be?

For anyone who is wondering, it didn't stay this easy.  There will be trials and tribulations coming up in this story.  For anyone who has been following and thinking that it's a piece of cake, we haven't gotten to the bad stuff yet.  There is some bad stuff to come, but I want to tell you how I dealt with it so hopefully it can be of help to someone going through this.

Coming in the next few entries you will see that there were things that I wasn't told about that I should probably have been told about.  There were things that everyone should know, but no one mentions.  It can get frustrating, and you will see what I mean.

The day after surgery ended on an easy note.  I actually got some sleep.

Tuesday, April 18, 2017

I Woke Up in the Maternity Ward

Surgery went fine.  I woke up in the maternity ward.  I was expecting that.  My breast cancer navigator had informed me that they did that because of the privacy in that ward.  I would automatically have a private room and it would be comfortable.  I liked the idea, and it worked particularly well in my case, because I was the only patient in the ward.  There were no babies at the time, so I had a whole nursing staff to myself.  I felt special.

I had been told about the Lidocaine and the drain, but it didn't really prepare me for it.  The thing that I find when it comes to surgery is that no matter how much research you do, and no matter how much information you have; it's still full of surprises.  I had a drain out my side with a little plastic bulb that needed to be drained periodically.  It was awkward and it reminded me of an old Katherine Helmond movie called Brazil.  You'd have to see it to understand.  You can find it on Amazon and probably Netflix if you want to check it out.  I also had a pouch with a ball in it that connected to the surgical area with a tube of some kind for the Lidocaine.  There were massaging cuffs on my legs so that I didn't get blood clots.  I had an IV for fluid levels.  Oh yeah, and I was missing a boob.

I didn't really know what to think of my current status.  The staff told me that everything went well.  I thought that they should know.  They had the experience in the situation.  I'd never been through it before.  I felt a little mechanical, considering how many things I was hooked up to.  The one thing that I noticed was that I didn't hurt at all.  I had been extremely worried about the pain, and nothing hurt.  I was excited.  This wasn't nearly as bad as I thought it would be.  Amazing.

Now, I know what you're thinking.  I've had surgery.  I know full well that the anesthesia hangs on for 24 hours, and that you don't feel the pain right away because of Lidocaine, mental blocks, anesthesia and shock.  I still was happy that I was alert and didn't feel pain.  Lidocaine is something that was previously used for joint surgery pain.  It is fairly recent that it's being used for mastectomies.  I can tell you after my experience that it's a great idea.  Good job surgeons for coming up with that.  I hate pain killers because they make me sick and cause me to feel wasted.  Lidocaine is great.

The wound was completely covered.  I had a bandage that started in the middle of my chest and went all the way around to my side under my armpit.  The nurses told me that it was over 20 centimeters.  I don't know much about the metric system, but that's large.

The nurses asked me how I was feeling.  I was actually feeling pretty good, all things considered.  I was happy that I woke up and there was no catheter.  I normally go in for surgery on parts related to the urinary tract, and I wake up peeing blood or having a catheter or a stent to deal with.  This was a different scenario for once, and I liked it.  You would have to deal with as many urinary tract problems as I have to appreciate the relief that you feel when you wake up and you can pee normally.  It's a matter of convenience that most people take for granted.

So, I ate and drank normally.  I had some bland food to start off with just in case, but there were no digestion issues.  It wasn't long before I got up and went to the bathroom with a little help.  I nearly did it all by myself right away though.  It was amazing how easy things were after a major surgery.  I did need help getting the massaging cuffs off and on my legs though.  Those things were tricky.

My husband was there.  He sat with me.  He was so very worried about me, and he noticeably relaxed as he saw me feeling way better than expected.  He eventually went home and brought my son back for a visit.  I think that everyone felt a little better after seeing that I was all right.  I hate thinking that I've caused my family any grief.  I can recuperate easier if I don't worry about them.  I'm a wife and mother.  It's who I am.

Here's the amazing thing.  I tend to just deal with my situation.  I don't live in denial and I don't avoid any subjects.  I just don't like to focus on the inconvenient or bad stuff that I have to deal with and there's no way to avoid.  I just deal and try to focus on something else.  So that evening, my something else was that I actually had CBS on the television, because the hospital has satellite.  I hadn't been able to watch Man With a Plan, Scorpion, or The Odd Couple for weeks  because the cable company is a pain in the ass.  So, little bit of happy in the middle of major surgery.

So, first night after surgery.  Great nursing staff, whole ward to myself, up and walking a bit, had a nice dinner, visited with my family, read a little, watched some TV and went to sleep.  Considering the fact that I had only cured one of my potential cancers, and that I had a long recovery road ahead, and that I hadn't gotten a pathology report telling me that this event was officially solved; everything was going pretty well.  I had been so worried, and at that moment I wondered why.

So, if anyone takes something away from this post, I hope it's that it wasn't as bad as I imagined.  I will continue to tell the story, so hopefully it will help someone.  

Monday, April 10, 2017

And The Day of Surgery Drags On

My surgeon showed up shortly after I was placed in pre op following my trip to nuclear medicine.  This time my husband and I were in the area where we could at least watch television.  There were other patients on either side of us awaiting their various procedures.  This is the part of the situation that tends to be very public.  You are sitting there with the curtains somewhat dividing you, but not really, and you can hear everything that is going on around you.  The nurses and orderlies come and go and check on your fluids and so forth. I always feel like I'm on some kind of assembly line in that phase of the operation (pun intended).

Let me pause here to say that my husband works in HVAC and he tends to know almost as many people as I do after all of my years at Walmart when we are out.  The day of my surgery was no different.  A few people asked where they knew me from, and I said Walmart.  But my husband knew the volunteer that was in the area from one of his on site jobs.  He was a nice older man and he volunteered at the hospital sometimes since he'd retired.  He was there helping make sure that we were all comfortable.  He came and had friendly conversations with everyone and got us a blanket or a drink of water or whatever he could do to make out wait more comfortable.  I think the fact that he and my husband were acquainted helped make my husband a little less tense.  He was nice, and it was a pleasant experience.

My surgeon came over and told us that there was one other person waiting and then we would be all set at 10 am or so, just as I was told.  That was good.  We talked and watched TV.  I got up and dragged my IV to the bathroom with me.  There's nothing on morning television, but at least they had Channel 3.  That was during the cable/CBS argument that lasted about two months this year in which I missed football playoffs, Man With a Plan, The Odd Couple, Scorpion, The Big Bang Theory, Live With Kelly, and The Late Show With Stephen Colbert.  I was excited that while I was in the hospital, I would get to see some of my shows.  I actually believed that in pre op.

Anyway, when it was time to go for surgery, my surgeon came and told me that he had to go and do an emergency appendectomy. What could I say?  It was an emergency.  So, we waited some more.  While we were waiting at some point, I'm  not sure when, the lady who was designated as my breast cancer navigator came by.  She's a really nice lady and she does great work for people who really have no idea what's happening to them.  She came to see how I was doing and make sure that I hadn't died of anxiety.  She always had a calming effect.

The thing that none of us counted on was that there was another cancer patient in pre op.  She was waiting for her husband to go to surgery, but she'd been down my road before.  She came over to talk to me when they took her husband in. My husband had stepped away at the moment.  She was very polite and said that she didn't want to bother me, but she'd seen my navigator.  We talked a moment, and the woman asked me if I would mind if she said a prayer for me.  I accepted her offer.  I'm not normally spiritual, but it seemed as though there was a reason for everything that was happening to me, and I didn't want to question or reject it.  It didn't seem productive to refuse a prayer.  The lady said a lovely prayer for me and then she went to the waiting room.

Eventually, the appendectomy was over and the surgeon said that it was my turn.  He'd come by and asked me if it was all right for him to push me back and do the emergency surgery.  He'd come back to see how I was doing again before my surgery and asked me if I was ready.  I don't know if anyone is ever really ready for surgery, but he is a nice man and has a great bed side manner for a doctor of the modern era.  I'm still very glad that he was my doctor.  There are some nasty ones out there, and I felt lucky with the one I got.

I went to the hospital that day scared, anxious, uncertain, and tired.  No matter how much research I'd done, no matter how many blogs and forums and articles I'd read; nothing could really prepare me for what I was about to go through.  There were support groups for survivors.  There were navigators to help you through everything.  I'd been in that operating room for a few things over the years, and I had never been treated with kid gloves the way that I had been with breast cancer.  And it wasn't even actual cancer yet.  It was still DCIS.

I was scared that my life was going to be ruined.  I was scared that something else was going to be wrong.  I was scared that there was more cancer lurking somewhere in my body.  I was scared that after  the mastectomy I would end up having to have a hysterectomy too.  It was a lot to deal with.  There was nothing that I could read or listen to or watch that would help with what I was feeling.  There didn't seem to be anyone that could tell me something helpful.  I felt alone, even with my husband and an entire staff around me.  I  had no realistic idea of what to expect when I woke up after the surgery.

They finally rolled me into the operating room.  They told me the usual, that they were about to knock me out.  They don't say much in an operating room.  Those guys aren't there to talk.  They are there to do the cutting.  In my case they were there to do the extraction.  They were about to extract an entire breast and a sentinel node.  I was about to be deformed intentionally for a disease that wasn't making me feel sick.

Having surgery when you feel fine is something that totally goes against my sense of logic.  I lost 48 pounds last year and got in shape.  I felt better than I'd felt in years.  I couldn't tell I had cancer.  I had no symptoms that made me feel sick.  I was having a boob lopped off to save my life and I felt fine.  It made no sense to me, but there I was in the operating room having it done.  My baser instinct told me to get up and run and that there was nothing that bad wrong with me.  I hated surgery.  This was not my first rodeo in an operating room.  My mind told me to run.  My heart told me to run.  My husband told me that he couldn't lose me and that I had to live to raise our son.

The anesthesiologist came and told me it was time.  I had to be there for my family.  I smiled and let them knock me out.

No one can prepare you for surgery.  No one can prepare you for what cancer and it's solutions put your mind through.  If I help anyone with my words, it will be to let everyone know that we all have to deal with it.  It doesn't make sense.  It causes more fear than most things medical.  There are no good answers for your feelings.  It defies all logic.  It makes you want to fight and give up at the same time.  Denial is the strongest feeling you will have.  When your family tells you they don't want to lose you, it will feel like a guilt trip.  You get sad, angry, and confused.  You're scared, frustrated, panicky, and mentally exhausted all the way through it.  No one can alleviate that.  No one can cure that.  You will go through all of the thoughts.  You will probably go through a phase where you just want to hurt somebody, but there's no one to hurt.  You'll want to yell.  Every time that you sit around and someone is complaining about their life, you'll want to strangle them.  It's all part of the process. 

Some of the things that I can tell you are about my feelings since this started.  I reached several points in my mental phases.  I reached points where I didn't want to talk about cancer anymore, I didn't want to discuss treatments anymore, I didn't want to wait anymore, I didn't want to talk about my feelings anymore, I didn't want to ever see a doctor again,  and above all; I didn't want to talk about my missing boob anymore.  After a while, everyone's good intentions and their trying to assure me that everything is all right just smothers me.  Sometimes I just want to be treated like nothing ever happened.  I want to be treated like a perfectly normal person.  I hope that someday I get to feel normal again.  That would be nice.

So, you won't feel normal.  I wish I could say that there was a magic spell or potion that would make your life seem normal again, but there's not.  I know that there are support groups to help you adjust, but I swear that I think sometimes talking about it keeps it too fresh.  I don't live in denial, but I do get sick of trying to discuss it to make me feel better.  So, make sure that you know what kind of person you are.  Let everyone around you know what kind of person you are.  You will be doing everyone a favor.

I hope that somehow this helps people.  Once again, I didn't learn the things that I thought I would from my experience.  I learned a whole bunch of things that I'd never anticipated.  Expect the unexpected.  It's your best defense.  And listen to your doctor.  Your mind will tell you that your doctor is nuts.  The doctor is not nuts.  Your defenses are trying to fool you.  Have the surgery.  Save your life.  It really is your only option.

Monday, March 27, 2017

Nothing Ever Goes as Planned...Not Even Surgery

I did my part for the surgery.  I didn't eat or drink anything after midnight.  I got up and trucked my butt to the hospital at 6:30 am.  I brought my husband so I wouldn't be alone and so that someone could take the car home while I spent the next three days and two nights in the hospital.  Fun for me.  I was actually about as nervous as I could possibly have ever been.  I hadn't been this nervous since the morning that I had gone in to be induced to have my son.  He is now almost 17 years old.

I had been briefed on the gist of what was going to happen to me that day.  The first thing that we did was fill out paperwork.  Just so that everyone knows this.  If you go in for surgery these days, they will ask you a bunch of unsettling questions about your death, and they will give you information on how to make a living will.  I wasn't sure what to make of that.  I guess it makes some people feel more comfortable, but it was not my thing.  I wanted to believe that everything was going to be all right.  They also ask you if you want to see a member of the clergy.  Not for me, but I thought it was a nice offer for people who are into that.

I then had to get the stent for my IV.  This is always a problem for me, because I have bad veins for that kind of thing.  As luck would have it, we'd all been through that rodeo, and the staff knew to put a hot towel on me to make my vein rise.  If you are one of those people, like me, with bad veins; suggest that.  It works.  Because of my knowing about the common problems I have and letting the staff know; it went pretty easily.  Normally, it's the worst part of my experience.

For my surgery, I had to go to a place called nuclear medicine before I could go to surgery.  Let me explain.  Because I had DCIS and had waited a while to have my mastectomy, my surgeon wished to check what they call the Sentinel Node.  They wanted to be sure that the cancer had not spread to my Lymph nodes.  I couldn't argue with the procedure.  I was going to be cut open in the area anyway.  Why not be sure?  It should be noted here that I had a choice about this.  I did not have to have this procedure, but I couldn't see a reason to leave anything to chance.  I had it, because I wanted to be absolutely certain that I was getting rid of all the cancer.  I wanted to make sure that I lived, because I had things left to do.  I was not going to give the cancer any chance to end my life before I had accomplished everything that I wanted to do.  I'm the kind of person who is neurotic about leaving things unfinished.  Life is one of those items on my list.

Of course, nuclear medicine is no where near pre-op, so I got to take my first trip across the hospital and down to the cellar I think.  I'm not positive that's where we went.  It was early that day.  The orderly was nice, but it was weird being rolled around on a portable gurney.  We had a nice chat, because he recognized me from my 15 years at Walmart.  I felt that I could walk, because I hadn't had any medications, or any procedures yet.  I guess it's policy that they roll you around once they have you admitted to the hospital and in a stupid little gown.

We arrived in nuclear medicine where they would locate the sentinel node.  They were supposed to inject me with some radioactive dye that would let them locate the sentinel node on some kind of x-ray.  I had never had this procedure done and it had come up at the end of the process.  I hadn't had much time to research the procedure, so I wasn't sure what to expect.

The first thing that I hadn't thought over ahead of time and hadn't expected, was to see the doctor that I had argued with at the mammography center.  He was my doctor for that procedure.  My first instinct was to punch him dead in the face, but I knew full well that if I reacted that way, they would make me reschedule the whole surgery in order to get another doctor when he walked out and refused to do the procedure.  I was worried when I first laid eyes on him that he would walk out and refuse anyway.

He didn't walk out.  At that point, I was relieved, because I didn't want to have to reschedule.  What he did do surprised me.  He was comforting.  He put his hand out and said that he would like to start over.  He introduced himself as though we had never met.  He apologized for everything that had happened in the past.  I was thrilled.  I agreed to start over.  I suddenly felt much better about everything.  I'd encountered a human doctor who had a bad day a few months ago and had treated me badly.  He now admitted that and apologized and assured me that he was going to give me even better than normal treatment to make up for it.  It was the most comfortable I'd felt in a while.

Next, he explained exactly how the procedure worked.  They inject you with dye in the side so that it goes to the correct area.  They give it about 15 minutes to travel and pinpoint the node.  Then they have you lay on your side with your arm over your head and they slide you under a special x-ray machine and they takes pictures for 5, 10, and even 15 minutes at a time until they see the node on the pictures.  He said it could take up to an hour.  He also said that there had been cases where they couldn't locate it at all.  He seemed to think that we would find mine easily.  Something to do with my size and previous imaging of that area of my body.  He told me that once they found the node, they would mark it with a pen and they would actually scratch my skin in the area so that the mark couldn't come off for any reason.  Okay, ready to start.

The injection didn't hurt at all.  That was good.  There was a nice technician that would be running the machine until something showed up on imaging.  The doctor had to go across the hall for other procedures.  The technician was the monitor and would get the doctor when it was time.  That was fine.

The technician and I talked for a bit while we waited for imaging time.  He recognized me and I told him that it was probably from Walmart where I worked for 15 years.  He was sure that was it, as was everyone else I ran into nearly everywhere I went.  We talked about families, pets, jobs, hobbies.  Small talk to pass the time.   15 minutes passed and it was time for me to get under the x-ray.

The technician had me lay under a machine that looked like any other x-ray machine, except that it had a kind of shelf that stuck out.  That was the part that I had to lie under.  I felt that at least it wasn't a tube like an MRI machine.  I lay down on my opposite side to expose the side we were looking at and put my arm over my head.  The technician slid me under the shelf and lowered it to just above me.  It was close quarters, but it was necessary.

I have to make a note here, for anyone who is having this done and a mastectomy.  I wanted to freak from the close quarters and my arm killed me during this procedure being over my head for what turned into a significant amount of time, but looking back it was great.  This was the last time that I would be able to lift my arm over my head for several weeks.  So, I guess it was good to get me to the point that I never wanted to put my arm over my head again.

I made three trips under the shelf during the procedure.  Each time the shelf was lower in hopes of finding the node.  I don't have many phobias, but I did not like being crammed under that shelf.  The technician was understanding.  He let me take a rest between each session and get out from under the shelf for a couple of minutes.  I have to say that things like that make the difference between good medical people and bad ones.  That technician was a good one.

We finally found it about 45 minutes into the process.  I was excited.  Then I had to lie under the shelf and wait while he went to get the doctor.  It seemed like forever, but it was probably less than a minute.  The doctor who was making things up to me came running the second he heard that the node had been located.  I was really impressed with a doctor that I had previously wanted to punch.  That took some work with someone like me.  Normally, if I hate you, that will never change.  I'm pretty stubborn that way and I do not believe that people ever change.  Lucky for me, he didn't say that he'd changed.  He said that he'd been having a bad day in the first place and made a mistake.  I think that made the difference.  Note to anyone who has a bad day when they first meet a patient.  Just tell us that it's a bad day.  We can all understand that.  Be honest about it.

The doctor looked at the images and pinpointed the node that he was looking for.  He then apologized for the fact that he was about to scratch me.  He marked me with a marker and then used a soda straw to scratch a circular mark into my side where the node was.  It wasn't that bad, but it did sting.  It was a worse feeling than the injection.  I'm not sure why.

Once it was all over, they put me back on the gurney and someone took me back to pre-op to wait for my surgery.  I was pretty well prepped and ready to go.  When I arrived back in pre-op, my husband was waiting patiently for me, asked me how I was doing and held my hand again.

The amount of radioactive material in you is minute.  The procedure isn't really that bad.  For anyone having a mastectomy, know that they are already in there.  Have the node checked.  There is nothing like piece of mind when you're dealing with cancer.  I will caution you that before you decide to have that node checked, know all that you can know.  You will see as my story goes along that I had an awful time recuperating because of that node.  I do not regret having it checked however.  It increased my recovery time almost three fold, but I'm still glad I had it checked.

Surgery day was a long day.  I will tell the rest later and hope that it helps someone deal with having a mastectomy.

Monday, March 20, 2017

Getting Ready For a Life Changing Event

I went to the surgeon on January 4th to finally schedule my surgery.  At that point, I had two other potential health issues and had been waiting to deal with this one since October.  I had been testing for it since September.  Four months and a lot of doctor's visits and tests had passed by the time that I was eligible for FMLA and able to schedule the solution to one of my problems.  At last we were moving past the detection phase of my issues.  It seemed like forever.  Anyone who has ever been through something like it will understand exactly what I mean.

The surgeon gave me two dates.  January 9th, which was only a few days away.  January 23rd, which gave me a little time to get my life prepared for the consequences of major surgery.  My surgeon, I must note was going to be gone during the week in between those two dates.  He does work in Haiti once in a while, which is a wonderful thing.  That middle week was one of his mission trips to Haiti.  To tell the truth, it made me like the guy a little more.  Anyone who travels to another country to do charity medical work can't be all bad.

I chose January 23rd, because as a wife and mother I had to get my life ready for this event.  I'm the typical woman.  I'm a control freak and I do a lot of things around the house and manage the household.  I wanted to make things as easy as I could on my family for the time that I would be down and out.  My poor husband hadn't even paid the bills or anything for decades.  My son was just about to take his driving test for his license and had just started a new job that he needed a ride 11 miles one way to get to and from work.  I had to consider that someone would have to take my shifts at the group home where I worked, and that would be no easy feat since I worked awake overnights on the weekend.  There were a lot of factors.

The first thing I did was give my dates to my place of work.  I wanted to give them as much notice as I possibly could.  Now, this was based on the idea that I would be able to get back to work in four weeks.  That was what the doctor had said.  I had told him that I had to be able to move freely and lift 50 pounds to go back to work.  I was very hopeful at the idea of four weeks.  I had a lot to learn.

The next thing the I did was to get with my human resources at work and get the paperwork turned in for my FMLA and my short term disability.  I had to have the insurance in order to pay for the surgery and subsequent medical treatment.  There would be visits, follow ups, physical therapy, and eventually that other biopsy.  My medical life was about to get complicated, busy and tedious.

After I took care of the business of preparing work, I let the family know what was going on and when.  I had a great support system with my friends, mother in law, aunt, and assorted other relatives all volunteering to help out.  My husband talked to his boss and told him that he would have to be out for a while to help me until I was able to handle a day alone in the house.  His boss is a great guy and told him to take the time that he needed and not to worry about work.  We should all have a boss like that.  Incidentally, that's what my boss has said the whole time too.  We both have great bosses.

The doctor said that I would have a drain coming out of my side for a week or so.  This said to me that I might need my husband for a bit while that was happening.  He told me to tell him when he needed me and he would be there.  It was the most wonderful thing that I could hear.  My husband has spent this entire time during all of my woes telling me how much he loves me and all that he cares about is me getting better.  He's been very supportive, and I don't know what it would have  been like for me otherwise.

Now, I have a sixteen year old son, a husband of almost 19 years, a 14 year old neurotic mutt that weighs about 40 pounds, and a 14 pound cat that likes to run in and out of the house 24 hours a day.  I wanted to make sure that they, and the household were prepared for the absence of my participation.  I wanted to make sure that there was food for pets, food for family, cleaning supplies, stamps to mail bills, toilet paper and many other things.  I didn't want them to have to run errands all the time on top of the work that they would be stuck with around the house.  They had work and school and driving tests to take care of.  They had no idea how hard it was to handle everything else.  At the time, my son had a girlfriend that lived 40 minutes away, and would need a ride to see her off and on.  There were a lot of factors that my family had never really had to worry about, because I normally took care of it.

Don't get me wrong.  I didn't think that my family couldn't handle it.  It's just that there is a lot of work.  There are days that I never quit moving just to keep the bare minimum done.  To have a whole other life of responsibilities fall in your lap along with a wife and mother that needs to be taken care of is a lot to ask of anyone.  My son would still need to make it through school and have the time to do his work and pass his classes.  My husband would at least need to sleep.  I was always the one that slept 4 to 5 hours a night and took care of everything while trying to lose weight, keep up on my side projects and work.  It took years of practice for me to be able to juggle it all, and I still wasn't that good at it.  I used to do a spring cleaning every winter while it was cold and dark outside, but I hadn't been able to do that sufficiently in a couple of years.  Home is a lot of work.

At any rate, I set about doing what I could.  I stocked up on things that I could like cleaning supplies and paper goods, toiletries and frozen foods.  I made some soup and other things that I could keep in the freezer for when I or the boys didn't want to cook.  I bought three dozen Chinese food containers on Amazon for $13 to freeze things in single servings to make it easier.  It was really great for soup.  I made sure that my son washed the dog right before surgery so that it wouldn't have to be done for a while.  I cleaned the house and washed all the linens.  I paid all the bills, some of them in advance. I made sure that there was animal food, cat littler, laundry detergent and so forth.

I also made plans for me.  I'm very active and would probably lose my mind if I hadn't planned something to keep me occupied.  I didn't know how long I would be truly incapacitated, so my first plan was to rewatch an old television series that I loved.  Northern Exposure had six seasons and I had purchased it years ago.  I had it and I decided that it would be part of my schedule to watch it all over again.  That should keep me busy along with the things that were recorded on the DVR and the things on TV.  I also scoped out some movies on Redbox that I intended to rent or have my husband rent and return for me.  I always have a stack of books around that I haven't gotten a chance to read, so I knew that I could read.  I do adult coloring, so when my arm felt a little better I could do that.  I was hoping that very soon I would be able to use my computer, because I do photography on several sites, I write blogs, and I wanted to take a shot at self publishing one of the 12 novels that I have written over the years. That would take editing.  So, activities were planned.

I talked to the ladies that I supported at work and tried to explain that I would be gone for a while, but I would be back.  I didn't know if they understood, but it made me feel better to try and explain it to them.  The people that I work with have been great through the whole thing.  they've pitched in to cover me and I don't even know if I will ever be able to make it all up to them.  I work with a great group of people and I really like them.  That has helped me get through everything.

I talked to my husband about how we would try to make sure that my son's life wasn't completely disrupted by my being down.  He was happy to help out with things.  He's been really wonderful about all of it. He promised that he would help run my son to his girlfriend's and that he would take him for his driving test.  He also said that he would help around the house so that my son didn't end up stuck with all of it.  That made me happy.

The one thing that happened during this time was that I fell over my dog and hurt my knee.  I couldn't catch a break this year.  I had it x-rayed because I was afraid that I had broken my knee cap.  It was just badly bruised and it still hurt really bad when I went in for surgery.  The day that I went to the Anesthesiologist, they asked me the abuse question of have I fallen in the last 90 days.  I had limped into the room so they said that they could tell that I was injured.  When I told them about the fall and the dog, we all had a good laugh.  I understand the questions, but sometimes I really hate them.

I didn't really have time to get ready emotionally.  I still wonder how anyone has time to dwell on these things.  To be honest, I've never really given much thought to the fact that I only have one boob left.  Life is busy.  I focus on so many other things, that I don't really have time to focus on that.  I wish I could say that it's been really hard, but the hard part of it only lasted a short time.  My husband has been so supportive that I've not really thought about it in a negative way too much.  Support is important, so if anyone reads this and has someone in their life that is going through it; take note of that.  Support is the key.  You can do anything with strong support.

So, everything was as prepared as I could make it.  The night before my surgery, my husband and I scheduled some time together, which I would have regretted had I passed on it.  Personal time is important, and it would be my last time to be whole physically.  I needed that, and he understood that.  Like I said, support is important.  My husband understood that I needed the time with my body whole that one last time.  By the time I went to sleep that night, I was as prepared as I could possibly be to go into surgery and come out with a piece of my body cut off.

I don't know that you can ever be truly prepared for a thing like a mastectomy.  I tried, and I did pretty good, but I still had phases that I went through emotionally.  I will talk frankly about them in the hopes that it will help someone.  Like I said, I did pretty good and so did my family.  We all knew that we had to go through this together.  There's a lot of love in my house, and we needed it all to get through this.

The next morning, I was going in for the toughest surgery of my life so far.

Monday, March 13, 2017

And...One More Issue

As we continue on, let everyone remember that no two cases of any disease or injury or condition are the same.

So, I had my period.  It had been fourteen months since that had happened.  That could only mean one thing.  More potential issues.  I had to call the OBGYN.  I didn't want to do that.  I thought that I was all done with that stuff.  I had been waiting for years to be through with menopause and get on with my life with no tampons or pads or Motrin or cramps or bloating.  Here it was again.  Just when you thought it was over.

The OBGYN got me right in and seemed very concerned that this had happened.  Most women that I know have told me that they've had their period once after that 12 month time when it was supposed to be over forever.  Most women that I know weren't nearly as happy about menopause as I was.  I couldn't have cared less.  I wasn't using my uterus for anything anymore.  Why would I care if it decided to retire?  But, apparently it wasn't retired.

So, I was due for a yearly pap anyway.  I went to the OBGYN to check it out.  I only had to wait a few days, and that gave me time for my period to end.  It did end.  It was a perfectly normal period for me.  I wasn't concerned about it at all.

So, I went to the doctor and I got to see a technician or physician's assistant or whatever.  The one thing that really irritates me about the OBGYN is that she has no time for her patients.  It's been a long time since I've seen the woman. I don't really even remember what she looks like.  She may not even exist for all I know.

Anyway, the technician asked me a bunch of questions and did my pap smear.  She asked me about time spans, symptoms and so forth.  I love describing my period to someone.  It's just not the thing that I like to tell stories about.  When I left after that appointment, it seemed to me that we had reached the end of it.  I was thrilled.  I didn't need any more crap on my plate.

As I was leaving , however, the lady at the desk said that they wanted me to come in for a vaginal ultrasound just to make sure that nothing was going on in there.  I told them that I was about to have a total mastectomy, so they scheduled it ahead a couple of months to give me time to have surgery.  I was grateful that I didn't have to do it right then.  I was getting a lot of anxiety built up.

After the appointment, I went on with my life.  It was less than two weeks until I could schedule my surgery and get on with things.  It was also almost Christmas time.  Lots of stuff was going on when the OBGYN called and said that the pap test looked okay, but not great.  They said that the doctor, whom I couldn't remember what she looked like had said that it was nothing major and that she would look at it again the next year.  That sounded like good news to me.  I wasn't going to worry about something that the doctor thought would wait a year.  Easy peasy there.  Back to worrying about getting Christmas ready and preparing for major surgery.

I'm not going to talk about Christmas in this entry.  I am going to continue on to right after New Years and what happened next with my uterus.

So, I went for my ultrasound for the kidney stones and went to see the Urologist and decided that it could all wait until summer so that I could have my surgery and not have too much going on.  I also had a dentist appointment right after New Year's and I had a cavity starting that wasn't bugging me, so they also decided to wait until summer to bother filling the tooth.  Two things out of the way so that I could concentrate.

Then some nurse over at the OBGYN calls me and tells me that I need to come in and have a biopsy on my uterus.  She didn't really explain why.  She said that I had to have it right away.  At this point, I had scheduled my surgery for January 23rd.  She said that I had to come for the biopsy on January 20th.  I felt bullied by her, but I agreed.

I then became worried.  I didn't want to have more than one kind of cancer.  I couldn't think about anything else.  This made my life difficult.  I'd had enough.  You know when you just reach the end of the rope so to speak?  That time when your mind just can't handle that one more thing?  That was where I was.  Kidney stones, cavity, breast cancer, and now potential uterine cancer.  It was too much.

I couldn't sleep.  I couldn't focus at work.  I couldn't think about anything else.  It was too much.  With the schedule of the events, I wouldn't even find out if I had uterine cancer before I went in to have the mastectomy to solve the breast cancer.  That's an extreme load of stuff.

Finally, a week before everything was to happen, I snapped.  I called the OBGYN and told them that I just couldn't go into surgery while waiting to see if I had more cancer.  I couldn't do it.  My mind wouldn't handle it.  I cancelled the biopsy and moved it a few months down the road.  One potential cancer at a time.  I didn't talk to that nasty nurse that day and of course the doctor wasn't available.  She never is.  I felt a little bit better after that.  It took one thing off my immediate psyche.

Now I know that it has to be one thing at a time.  Three is too many.  The mind has to work.  Don't let any nurse bully you either.  If you can't handle it, take it off the pile until you can.  If your mind explodes, you can't handle anything.  If you can't handle the one more straw, then put it on the back burner.  Save your mind.  You are no good without it.

My family supported me through all of my problems.  They supported me when I said that I couldn't handle that one more thing.  They supported me in every way.  I'm glad that I kept them in the loop and kept them involved.  I would have been lost without them.

Don't let anyone bully you.  Remember, each of the doctors are only covering their specialty.  They want to take care of their part.  They don't take into account all of your parts.  I hate to say it, but they don't care about the other parts.   You need to take care of all the parts.  It's all about you in times like that, and that's all there is to it.  If you have to, tell all of them to go take a hike for a while.  In my case, I looked up all the kinds of cancer that I might be facing on  I found out that lady part cancer moves very slowly, and my doctor hadn't seen any real signs of anything.  I asked the physician's assistant, since I can't ever talk to my doctor, if there was any reason other than my period for the biopsy.  There wasn't.  So, on the back burner it went.

As I continue with my story, you will hear about how I handled everything.  It was more than just DCIS.  There were so many potential things going on that my mind actually went numb at one point.  I handle things pretty well over all.  I know when there's too much.  I know how to prioritize.  I know myself.  That's important.  Make sure that you are self aware.  That's the key to life and definitely the key to handling bad times.  Make sure you have a support group.  I had my whole family and all of my friends.  I also had my boss and coworkers.  It helps.

I hope that this all helps someone.  I'll have more later.

Thursday, March 9, 2017

The Next Issue

My time off had gone well.  I went back to work, finished my Christmas decorating and shopping.  I probably went a little overboard, because there was a voice in the back of my head that worried that this would be the last Christmas that I would get to spend with my family.  Unreasonable yes, but I couldn't help how I felt.  The severe depression that I battled periodically throughout my ordeal went in and out of my psyche like the magic bullet went in and out of JFK. I never knew when it would strike or what effect it would have on me at the time.

I wrapped presents and started to plan my holiday around my work schedule.  I wouldn't be home at midnight on New Year's Eve for the first time since my son was born.  I came up with a plan where we would celebrate with the Brits online at 7 pm so that I could get to work by 11.  I also planned out Christmas Eve so that we could still do all of our traditions and I could get to work by 11.  It was all going along fine, until one night at work on my overnight shift.

The pain wasn't that bad, but I knew it well.  When I found blood in my urine, I knew for sure.  I had a kidney stone.  One of the things that I am plagued with in life is that I manufacture calcium-oxalate kidney stones.  So, on top of cancer, I had that to deal with.  I got used to the pain a long time ago, so I was able to finish my shift.  I was asked to stay late that day, and I didn't want to do that with a kidney stone pass in progress, so I went home on time.

Unfortunately, I continued to bleed and have some stabbing pains throughout the day.  The bleeding got to be excessive in the evening, and I ended up in the emergency room.  I have to say one thing about my life.  With all of the annoying stupid problems that I have, it's a good thing that the hospital is right up the street.  I could walk there if I had to.  At least it's convenient.

So, a few x-rays and a catscan later found that I had kidney stones in both kidneys.  I was not excited.  I didn't make it to work that night and went home late and tried to get some sleep.  By the next morning I had passed the small kidney stone that was in my tube.  There was still one stone that was too big to pass.  Sooner or later, I would have to go to the operating room for a lithotripsy or to have them lasered and removed.  It would not be my first rodeo with any of that.  I had already had one lithotripsy in life and been in for laser removal three times.  Just more fun for someone who was suffering from the extreme stress of upcoming cancer surgery.

The surgeon had told me that I would not die of DCIS.  At least not my case of it.  It was completely contained and would be a simple fix.  That is, if you can call a total mastectomy simple.  What I was facing now, was just more medical procedures.  There would be more appointments, more tests, more trips to the operating room, and so on.  I was seeing dollar signs.  I was seeing lots of dollar signs.  I was seeing a scenario where I became a weak person because of all the procedures and surgeries.  I am not weak.  I've spent my whole life becoming the strongest woman I know.  I did not want all of my hard work building a self sufficient, strong willed, highly intelligent, capable, wise woman to go to waste.  I didn't want to fall apart.

The good news was that the idea of having kidney stones removed didn't scare me.  It was old hat and that didn't bother me.  I didn't have a clue how it would go along with the mastectomy, but I figured that we were about to find out.

I went to see my urologist a couple of days later.  I was still bleeding and he asked me if maybe I was menstruating.  I told him that I wasn't, and that it couldn't be because I was through menopause.  He didn't seem convinced, but he left it alone.  He talked to me about the stones, which, incidentally, the hospital emergency room staff had told me that one of the stones was not passable.  My doctor informed me that they were both unpassable. Lucky me.  He did say that with the new machine that they could lithotripsy both of them at the same time and resolve the problem.  I hoped that was true.  I hadn't had any luck the first time I went for a lithotripsy.

Lithotripsy is a high powered ultrasound that can aim at a target.  The theory is that when aimed at your kidney stone and zapped, it will shatter the stone.  Then you can let it wash out in urine naturally.  I have my doubts about it since it didn't work before, but he insisted that it was much better now. He scheduled me for some more imaging in order to pinpoint the stones, and I went on my way for the day.

The next day, the bleeding continued.  I called the doctor.  They said that they thought that it had to be vaginal.  They hadn't seen anything that would make them think that I would still have blood in my urine.  Upon investigation, they were right.  I was having my period.

As I continue, I will tell you all of the ridiculous things that happened in relation to and collusion with my cancer.  It was a wild roller coaster, and almost no one knows everything that went on.  I will tell the whole story.  I want everyone to know that like my story; all stories are unique.  The reason that I am telling every complication, every relationship issue, every work issue, trouble with pets, family, bills, insurance and so on is so that hopefully everyone can see just how personal each person's journey is.  There is no mold or formula or pattern or routine.  We each have our particular demons and challenges and frustrations and fears.  No two women are alike and no two women's cancer stories are alike.

I hope that this helps at least one person cope with their story and what they are going through.

Tuesday, March 7, 2017

Waiting For FMLA Part 1

I had a little over two months to wait before my surgery.  That's never a good thing when it's me.  I had way too much time to investigate my situation, read what other people had been through, and think in general.  Fortunately for me, it was Christmas season and that gave me something else to focus on.  I had a whole porch full of decorations to put out and a house full for inside too.  I had presents to buy, order, wrap and ship.  I had music to play and cooking to do.  Lots of things that kept me busy every year during the holidays.

This year, I did something that I'd never done before.  I took a little time off from work for vacation during December.  I'd always worked in retail and various other seasonal fields, so I'd never had the chance to do that.  This seemed like the perfect time to try it.  My husband joined me.  We didn't plan a big trip, because my son had to go to school.  We didn't want to take off and leave him for a week or anything, so I planned some things in the area for us to do.

The first thing that I planned was for us to go and watch a live taping of the Late Show with Stephen Colbert.  My husband had always wanted to do that.  We are both huge fans.  I managed to get the tickets, so we went and spent the day in Manhattan.  We went to Rockefeller Center, saw the windows at Saks Fifth Avenue, went to the winter carnival at Bryant Park, and ate at Chef Pho's in Hell's Kitchen.  We also stopped off in Times Square while waiting to get into the show and I saw a taxi getting a ticket.  I'd never seen that before.  At any rate, Vice President Biden was on the show that night and it was a great time.

I also planned one overnight trip to Foxwoods Casino.  It was nice to go out and do something for the night and not have to worry about how much I drank while gambling at the bar.  It was a really good time, and I came out ahead for once.  It almost balanced out what my husband lost.  We did a lot of walking, tried some of Guy Fieri's new restaurant's food and looked in the outlet stores.  It was relaxing and gave me and my husband some time alone without things hanging over our heads.

The third thing that I did that week was to go with my son and two of the ladies that I help support and some coworkers to what we call Holiday Lights.  This is at Lake Compounce, our local amusement park.  They do the whole park up with Christmas lights, and have Santa Claus and music all over the park.  There are some rides open and a whole lot of great food.  My son and I try to do it every year.

What I accomplished that week was to relax a little.  I had the stress of the holidays, some extra stress from work situations, and of course the upcoming mastectomy on my mind.  I probably shouldn't have taken the time off, but I really needed it.  My mind works nonstop, 24 hours a day when life is normal.  I have trouble sleeping on a good night, much less when I'm all stressed out.  I felt bad about using the time, but I felt much better after relaxing a bit.

By the time my little vacation was over, I only had a month left until I could schedule my surgery.  I was feeling a little better, and was less nervous about the surgery.  I thought I had it all under control.  As I soon found out, and have found out many times over during this time, I did not have it all under control.  I come from a family full of people who can never have one simple problem.  There seems to have to be multiple problems.  In my next entry, you will learn about the complications that arose to make my journey so much more complicated.

Take my advice.  I know that with the crappy expensive insurance that we are all forced to have these days, the idea of spending money right before you know you have to have a major surgery seems totally irresponsible.  Think about this however.  You are about to go through a life changing experience.  You quite literally may not be the same person after.  Take some time.  Enjoy the life that you have.  It may never be the same again.  I'm not saying that it will get bad, but it will be different; even if just ever so slightly.  I'm glad I took the time.  I'm glad I spent that time with my husband and we got to enjoy each other before all of this happened.  It was a gift and it's a gift that everyone should take the time to enjoy.

I hope this helps someone struggling with difficulties and wondering what to do next while going through breast cancer.  If I help just one person, it's worth it.

Thursday, March 2, 2017

So What Do You Tell Everyone?

I told the story so far about my medical drama.  I decided to leave the hard stuff for separate posts.  The one thing that doctors don't seem to take into account and neither do most forums, support groups and other accounts is what do you tell people?

I thought about it.  I've spent a lot of my life hearing about what empowers women.  At the same time I've seen that women don't want anyone to know when they have cancer.  The two opposing actions confused me.  I didn't want to upset the people that I care about.  It made sense to leave it on a low key.  The problem with that was that I am against guarding information and lying.  It was something to wrestle with.  How many people should I tell?  What circle should the information be given to?  How much should I divulge? All pertinent questions.

I did tell my mother and mother in law.  My husband and son automatically knew, because I tell them everything.  I would never keep anything from them.  My mom lives in Arizona and lost my dad a couple of years ago.  She still has a lot on her plate and she doesn't travel well, so she couldn't come and help me.  My mother in law lives in the same town as me and is always willing to help out.  She has her own cancer, so she has a little experience with this stuff.

My mother in law was concerned.  She wanted to help and she was very understanding.  My mom was devastated.  She cried on the phone and there was nothing I could do.  I felt helpless, as did she.  She wanted to be here for me, but she just can't travel anymore.  She lost a step child a couple of brothers and sister and my dad recently.  I was really worried that she was not up to this.

I did it.  I sucked it up and told the family.  It actually went better than I thought.  My mom up and sent me a bunch of money to help the minute she heard. She insisted, since it was all she was able to do to help.  I was grateful, and put it aside to help with the medical bills.

Once that was all settled, I felt that I should tell my coworkers.  I think that this was what started me on the road to being truly liberated about the whole thing.  I told one coworker and it was easy.  There was no pity and I didn't feel uncomfortable.  After that, I told them all.  They were empathetic and told me that they would help out while I went through the surgery and all.  It was good.  I told everyone that I would keep them updated as things moved along.

So, the work hurdle was fine.  My husband wasn't sure who to tell what, so he was keeping it fairly quiet at work.  He has the unique circumstance of working with people that we've both known for years.  It wasn't long before I told him to go ahead and share it with them.  By then, it was just another thing in my life that was happening.  It was becoming less and less of a big thing.

The next thing I did was to invite a bunch of my girlfriends over and tell them what was going on.  I made some lasagna and bought some good brownies and we all got together to eat and chatter.  I hadn't gotten together with my friends for ages anyway and it was high time. I wished that it could have been under different circumstances, but I liked the visit.  I spent the whole day with the girls going in and out of the house. I didn't put a time on the gathering.  Everyone had work and kids to deal with, so they stopped by when they could and left when they had to.  We laughed and listened to music and ate. 

It was a great day for me.  I told everyone what was happening, and they were very supportive.  After that, we went on to overeating and gossip.  It was actually a lot of fun and I felt even better about it after that day.  I didn't feel alone after the support from family, work friends, and friends.  One of the ladies that I worked with at the time had also had a mastectomy.  Two in fact.  She was a great person to talk to about all of it.

My time with the people that I care about helped to empower me.  I've read for years about female empowerment.  I think it's different for everyone. I would like to think that women all think the same way and that it's an automatic sisterhood,  but we are individuals.  As much as we don't like to be, we just don't all think alike.  We don't all have the same reactions to things.  We don't all have the same way of dealing with issues.  We don't all have the same definition of empowerment.  We are all wonderfully unique creatures with an amazing capacity for love and strength.  I do know that for the most part we all do like lasagna.

And that became my coping mechanism.   Humor.  I learned during the more painful times in my life that you have a choice.  You can laugh or you can cry.  You get get pissed on or you can get pissed off.  The choice is up to the individual.  I've always opted for laughter and anger.  They keep me strong.  I feel empowered when I can look at something potentially devastating and laugh.  The world can take a lot from me but not my spirit.  That's who I am.  Fly in the face of.  That's empowerment to me.

So after telling the people closest to me about my breast cancer, I became very open about it.  I joked with my family about my upcoming mastectomy. I said that I wanted my prosthetic breast to be neon purple with a yellow daisy on the end where the nipple should be.  I said that I wanted to tattoo something silly about my missing breast on the base of my neck and let the general public wonder what it was about.  Empowerment has nothing on me.

At any rate, I'd started to cope.  I still had a long wait for a very serious surgery.  My nerves were still not good, and my mood changed minute by minute.  I tried not to take it out on anyone.  I've been told that I did all right with that.  No one said that I did great.  I hope that I really did do okay.

All I can say to anyone in that position is that you have to do what you can and take it one day at a time.  Sometimes you have to take it one minute at a time.  It's not easy, but it's not impossible.  You have to find your way of handling it.  No one can tell you how to handle it and they shouldn't try.  It's just rude.  The one thing that I can say is that you have to think about it, no matter how much you don't want to.  It's the only way to start to cope.

I will continue to write this in hopes that it will help someone.

Wednesday, March 1, 2017

The Government Got Me Again

So, I decided to not wait to have my mastectomy.  I don't like to wait to have things solved.  It gives me too much time for my mind to overwork.  I'm the kind of person that will go nuts with too much time to think about something and too much time to get a lot of information from books, people, television and the internet.  I start to second guess myself and have horrible dreams about the outcome.  I get all worked up about pain and money and all kinds of stuff.  In this case, I made another appointment to see the doctor and schedule the surgery and just be done.  Solutions are better to me that sitting on my butt waiting.

The second visit to the surgeon was easy.  I told him what I'd opted for and he didn't have a problem with that.  I went to the office with the assistant and scheduled the surgery for the following Monday.  Now, all I had to do was stop by the office at work and let them know and start the paperwork for my leave.  Easy Peasy.  Or so I thought.

When I got to the office, I encountered the one thing that I hadn't thought of.  FMLA guidelines.  I had worked at my old job for 15 years.  I hadn't thought about that FMLA stuff for at least a decade.  Unfortunately, I had decided to switch careers less than a year before, and that meant that I didn't qualify for FMLA.  Now, my place of work assured me that they would never fire me, but there were some inconveniences associated with me taking a non FMLA leave.  I probably would not come back to my exact position.  I wasn't happy about that at all, because I had taken the job because of my exact position.  I didn't want to be moved.

The other thing that immediately became a problem was the fact the my health insurance wouldn't be at the rate that I paid as an employee.  It would revert to COBRA pricing, which was more than three times what I was paying.  Basically, it would be as though I quit and came back when I was released from doctor's care.  At that point, they would give me an available position somewhere.  In the meantime, I would have to pay a fortune for insurance and collect unemployment.  None of that was for me.  Most of that wasn't even possible.

At that point, I put everything on hold and went to talk to people that knew more about this stuff than me.  I went to talk to the navigator at the hospital.  I told her what was going on.  She knew my case, so she was well versed in what I was about to do and what I needed to do.  She told me to just talk to the doctor and see if it could safely be postponed.  I only had to wait less than two months.

After that, I got a hold of the doctor and told him my issue.  He said that the DCIS was completely contained and that I had time.  He said that even if it started to breach the ducts, that I had plenty of time.  He was not concerned at all about waiting a couple of months, and he actually felt that the security of FMLA and short term disability would give me peace of mind.  He said that going through the mastectomy was more than enough to have on my mind at one time.

With that information, I told my family and my boss that I would continue to work and wait until I qualified for FMLA and short term disability.  Some people thought that it was an unnecessary gamble, but since the doctor said that it would be all right; I decided to take the route with the peace of mind.

Now, I just had to get through the next two months of waiting around to have major surgery.  I knew that the way my mind worked would make this the longest two months of my life.  It would also put us into the next calendar year and cause me to have to meet the high deductible on my health insurance again just to have this done.  More money.  Fun.

Just a note to anyone going through this.  I waited to do this surgery.  It depends on the type of person you are as to whether or not you should pull a stunt like that.  If your mind runs away with you, don't wait.  Depending on what kind of cancer you have will help you decide whether or not to wait as well.  If you find yourself in a position where you feel as though you should wait for any reason, talk to your doctor.  Make sure that the experts are comfortable with waiting.  If not, have the surgery immediately.  Remember, most surgeons dealing with this kind of thing are going to be reluctant to out-rightly tell you what to do.  You may have to ask for their opinions.  Do it.  Get the information you need to make the best decision.

 Sometimes when we hear the word cancer we forget about everything else in our lives.  The word alone strikes such horror that it's hard to look at the big picture.  Women dealing with breast cancer tend to have many more things to consider than just cancer.  I know it's not popular these days to mention it, but family, work, marriage, finances and even time of year can make a difference.  I know that these days women are encouraged to let everyone and everything else be damned and do what they need to do, but we can't really do that.  No one can.  It's not just women who can't, but neither can the men.  It's hard, but we have to remember that there are people in our lives that care about us.  But they also depend on us.  I do not advocate doing anything stupid in order to do for others.  Just make sure that you consider everything in all of your decisions.  Do what you have to do, but remember that you are not the only one in your life going through it.  You are not alone not only means that you have people there to help out and take care of you.  It also means that you have people who are effected by what is happening to you.  Your husband will be just as scared of the word cancer as you are.  Your children or parents may take it even worse.

So, if you encounter a problem like I did, start talking to people.  Talk to everyone you can.  Get all the information that you can.  Decide what is best for you.  If you have choices, make sure that you make the choices that are best for you and those you love.  My family didn't care what I did as long as I got better.  I had their 100% support.   What I did and continue to do is tell them everything.  Information is good.  Don't leave your loved ones in the dark.  It won't help anything.

When this situation happened to me, I was scared.  Even when the surgeon had no concerns about waiting, I was scared.  If I had to do it all over again, I don't know that I would make the same choice.  The frightening thing was that I didn't realize how messed up my head was while I was waiting.  I do now.  It's a lot to think about for a long period of time.  My problems started in September and would not be resolved at all until almost February.  It's a long time to let the mind wander.  Consider that in any decisions you have to make as well.

I will continue to tell this story for anyone who wishes to read it.  I hope that helps someone.