Monday, January 25, 2016

Round Two: The week from hell and catching up

(Long post alert.  Playing catch up)
So week two of chemo fun came around and we felt more ready for it this time then we were last.  We headed up early to the clinic because Denise wanted to hit the wig shop that is included with her treatment.  Great thing about the Cleveland Clinic is that if you need to get between buildings they offer shuttle service.  On a nice summer day, the walk wouldn't be a problem.  However, the temps this day were only in the 20's if that, so the shuttle was most welcome.  
We got to the Taussig Building and found the shop.  Nice little shop and even nicer person working there.  As soon as we walked in, Denise pretty much found the one she wanted.  Funny thing is, it looks pretty much like her current style/color!
So with the wig chosen, it was back to the Crile Building and time to get hooked up.  We were there early and we luckily were able to get called back early to get things rolling, which was nice.  Since Denise has a hard time with IV's, there was extra time to get that taken care of.  At least on the off week, we are suppose to have that installed.  (Well, that was the plan, but more on THAT later.)
Once Denise was all hooked up, it was medicine time.  Two of them this time.  Really the whole treatment went without incident or issue.  That night, Denise was tired, but for the most part, feeling okay.  The next day, Tuesday, she kept up with her anti-nausea meds and did good as well.  Wednesday was without incident too, so I was able to actually be at the office that day and get some stuff done.  Thursday morning rolled around.  My alarm went off at 5 like it normally does.  When my alarm goes off, that usually means that I spend the next 30-40 minutes lying in bed, reading news on my iPhone and debating if I want to get up or not.  I finally got up, got ready and then noticed Denise wasn't in bed.  She will usually sleep in the living room on the new recliner when she doesn't feel good so I wasn't too concerned.  When I went out to leave she told me she got up around 2 and had to go to the bathroom.  She said she felt really light-headed and dizzy.  I decided I was going to work from home since I had to work on a conference call with a consultant anyway, but told her to call the doc at 8 and tell them her symptoms.  Luckily, my call didn't last long.  Denise called the doctors and they told her, in no uncertain terms, to get to the hospital.  Since we're over an hour away from Cleveland we went to our local hospital ER.  Luckily for us, we didn't have to wait long once we got in there.  We explained to them her situation with chemo, her symptoms, etc.  While this is going on, her BP was a roller coaster, which was not good.  They started running tests on her to try and figure out what was going on.  Meanwhile, her blood pressure was going back and forth and she was just miserable.  To add to the misery, they couldn't get a good IV going on her.  Denise has always had bad veins and when it comes to IV like for the chemo it usually takes a while to land a good one.  Really wish we would have gotten that port put in sooner.  After some hours, the doc came in and told her that she had a bad infection and it went sepsis.  So the course of action was to admit her and get antibiotics via IV.  By Thursday night, they seemed to start taking hold and I left for the night.
Friday rolls around and I went back down to the hospital.  Not a whole  lot went on, but she was getting antsy.  After spending the day with her, I decided to head back home and she agreed.  So off I went thinking that tomorrow she would be coming home. Wasn't home too long when I got a text from her.
If you guessed "Andy headed back down to the hospital at this point", you would be correct.  I ran back down and we tried to get to the bottom as to what was going on.  Seems that her heart went into afib and they caught it.  They noted that her potassium level was a bit low and felt that could have been what triggered it.  To remedy that, they wanted to give her potassium via IV.  They warned it could be a bit painful.  It was for her.  4 fours.  I've never seen my wife so miserable and the only thing I could do for her at this point it hold her hand, pray with her and do what I could to comfort her.  Prayer works. When that was done at 1AM Saturday, we both just wanted to pass out.  Luckily she got a private room and there was a recliner in there for me.
Saturday morning I took off home to get some sleep and do some server work for the day job.  While I was gone, the cardiologist came in and discussed her afib.  In the meantime, Dr. M, her chemo doc, was also on the phone with me getting updates and sharing his personal cell number to give to the cardiologist.  (I so dig Dr. M).  Well, getting a treatment down took until Sunday and that's the day she came home.  Originally that Monday, MLK Day, was the day she was suppose to have gotten her port installed to make life easier for her with chemo.  But that had to be rescheduled for a week later.
We met with the cardiologist on Tuesday of the next week.  Denise gets to wear a heart monitor for for a month now.  So far, so good.  Hopefully, it's just an isolated episode considering all the crap floating through her body.
After meeting with the cardiologist, Denise decided she wanted to go to Great Clips and get her head shaved.  We were 8 days after her first treatment with the chemo meds that make you loose your hair, and she wanted to take matters into her own hands.  She wanted to own it.  And she did.  When we got to the salon, there was no wait for us and we were able to sit right down.  Denise told the stylist that she was going through chemo and wanted to go ahead and shave off her hair rather then wait for it to come out.  The stylist told her that for this, there's no charge, (total class move), and she couldn't have been more incredible with her. So when she was done, it was my turn.
Actually, the next day when she went back to work, her boss did it too.  And Denise got to do it!
The rest of the week was pretty textbook for the most part.  Denise got back to work and got into the swing of things.  Working did make more tired quickly so when she got home at night she was pretty nuked.  But it was nice this past weekend for us to go out to dinner and just enjoy some time away from home and away from a medical facility.  
So that is it for now. 
Denise and I can't thank you all enough for your moral/spiritual support over these last couple of weeks.  It's been a bumpy start on this road to healing, but hopefully the potholes are behind us and it's nothing but smooth sailing from here. We know that's not likely the case, but, we can dream.

In our next episode, the port installation!
Stay tuned.

Sunday, January 17, 2016

Round One: January 4, 2016

This winter was suppose to be an El NiƱo winter. You know, where its warmer and you don't get a lot of snow.  Well, old man winter decided that the first day we needed to make a run from Bolivar to Cleveland, he would drop in with a few inches of snow and say howdy. Luckily it was just typical NE Ohio lake effect so you would have stretches of the roads just fine then run into a wall of snow and you would want to turn and run. But, we made it through the storm and to the clinic on time.  We went up to the office and waited for her name to be called.  Seemed like forever.  We went back to where they do the chemo and it's rather nice.  Each person gets their own small private room and a comfy chair to sit in.  Our nurse, Nurse J, (again, for privacy I'm not giving names), came in and got Denise ready for treatment.

Took a while for them to get a good vein to tap into to.  Denise has always had that problem with that.  The procedure started like many others I'm sure.  Get stuck, make sure things flow in right, a little pre-med and then finally, the chemo.  This trip was just the one medicine, Dexamethasone.  When they brought the bag out to hook it up to her, that's when it hit us.  This was for real.  Was a tough couple of minutes.  

But once it got going, things settled back to normal and we just let it do it's thing.  Didn't have a whole lot of time to "relax".  Nurses coming in and out, social worker stopping by to tell us about all the services, etc.  Before we knew it, we were done.  On the ride home, I tried to joke and lighten the mood.  We knew that this was just the first of others to come.  But she did it.  We were on the road to healing.  But there is a lot of road yet to go.  

Saturday, January 9, 2016

Twas the night before chemo

At this point in our story, it's the night before Denise's first chemo treatment.  Sunday, January 3rd.  Denise and I had spent the afternoon running around doing the grocery shopping, getting laundry done, the usual Sunday chores.  It was getting closer to the evening and thoughts about going to bed early were on our mind knowing that the next day was likely to be a long one.  Our son Alex and his fiance Laura came out in the living room to join us.  
Alex sat down on the couch and Laura joined him. 
"We have some news for you guys.  I'm going to be a Dad!"
Just like the old saying goes. "Want to make God laugh?  Tell him your plans."  Was just the thing Denise needed to hear to motivate her even more to kick this things butt. 
Our grandchild is due in September. 

Friday, January 8, 2016

The Holidays

At this point in our story, we had just had our first visit with our doctor and found out exactly what needed to be done.  What we hadn't started to do was one thing that was really important.  That was Christmas shop for our kids.  With all the recovery from her surgery, we hadn't had a chance to really get a start on shopping for them.  Our plan was that since it was already December 22nd, would should probably get a start on that.  We woke up early with the plan of getting showered and out the door.  But then the phone rang with a Cleveland number on Denise's phone.  She answered and it was Doc M.  He personally wanted to call to let her know that the results of the CAT scan had come back and they were clean!  Nothing else was showing up on them, no other growths, NADA!  That put us in a GREAT mood for the day and helped us pushed back any thoughts about the road ahead.  So away we went shopping!  From that point forward, the holidays were pretty much a non-stop blur.  Having dinner with our family on Christmas Eve.  Late Mass down in Dover.  Christmas morning breakfast with Denise's folks....and at that point we were BEAT!  Christmas day quickly became a "let's just sit around and watch movies" day.  And it was.  But when Christmas was over, the marathon to our New Years Eve party began.  On hearing the news about what was going on here, our very dear friends from Michigan said that they were going to come down and celebrate with us.  So, we had to get the house clean, get things moved around to make room for them to stay and just general cleaning that you normally do before you have a house full of people.  Laughter is truly the best medicine and thanks to the people shown below, it was a great time. These people, as well as ones not shown here, are big parts of our lives and have supported Denise and I though all of this.  And they have all promised to be there for us when we need them.  They're good people, and we love them all.
Trixie's Tribe
With New Years over and our friends safely on their way home, it began to hit us.  We were going to have to take the first steps on the road ahead of us.
That's when we got the news.........

The first appointment

I'm sure most anyone who is told that they have cancer goes through the same thought process. Denial. Acceptance.  Fear.  Denial again.  More fear.  Ignoring it.
From our house to the Cleveland Clinic, it's a bit of a hike.  Usually about 90 minutes plus in the car.  So on the day of her first appointment we got up early and headed off.  Even the whole way up there, I think we both had the feeling that this isn't going to be anything.  He'll talk about what they found, maybe say "come back in 6 months and we'll check again, etc.".  Wishful thinking that anyone goes through I'm sure.
Arriving at the Clinic early, I made a major screw up with parking and caused a major backup onto E. 100.  We quickly found our way to where we needed to be and let our friend Mandi know we were there as she's employed there and wanted to make sure to be in the loop.  I was amazed just how hustle and bustle goes on at the hospital.  It's not like any I've seen before.  Lots and lots of people moving about in all different directions at once.  We found where we were suppose to be and checked in.
Then the wait.  Wasn't too bad.  They call use back and check Denise in, checking height and weight.  We sat in the consulting room and the nurse started going through a list of questions, normal first visit stuff I'm sure.  After that she left and the anxious wait began.  Luckily it didn't last too long.  Doc M, (for privacy purposes, that will be his name on here), came in.
You know you're getting older when the doctor in younger then you.  Right way we liked the guy.  Positive, nice, energetic.  He started to talk to us about the mass that was removed and all the things that have gone on with us.  He mentioned that he never got a surgery report or biopsy report from our hospital.  Luckily, I had a copy.  He went through that document with a fine tooth comb it seemed like.  Between that report and the biopsy the path was clear to him.  Chemotherapy and no radiation.   That's when we needed to grab the Kleenex box.  To me the best way I could describe hearing that news was that my soul got kicked in the nuts.  But, I had to try to be strong for Denise.  The doctor said that while he feels the surgeon removed every bit of mass, there is a strong likelihood that there could be microscopic cells left behind and if there are, it could come back and go to places like the liver or lungs and he doesn't want to risk it.
My question to the doc was simple, "If we do this, can we kick this things ass?"
"Yes".  A simple, but powerful response.
I like this guy.  He's a fighter for his patients.  He was ready to start the treatments right away, like the week between Christmas and New Years right away.  I made a joke to Denise that we should cancel the New Years Eve party.  Doc heard that and said that we can enjoy our holidays and start right after the new year.  Which was cool so that we could enjoy the holidays.   So the date was set, January 4th would be the start of the treatments.
The 3 week cycle of treatments are as follows:
Week 1 - Gencitabine
Week 2 - Gencitabine and Taxotere
Week 3 - Off (PARTY!)
But before we started all this, he wanted another CAT scan done on her and blood work.  Since it was early, I asked if we could get it done that day and he was able to make it happen to save us another trip up there.  I like this guy.  So that required some running between buildings, but we got it done.  Took longer for the CAT because Denise needed to get pre-hydrated, but we got it done.  It made for a long crazy day, but after we left the hospital, we headed over to lunch on the east side.  After lunch we were driving around and Denise looked at me and said, "You know what, I'm good with this.  I'm okay with what I have to do.  I'm going to do it."  She was really at peace with it.  I couldn't be prouder.  Me on the other hand, that's a different story, but that's for another time.
So the road to wellness was put out before us. The first steps taken.  There's still a lot of road to go.

Tuesday, January 5, 2016

An unwelcome guest

I guess any story of any type needs a beginning.  So, here's this stories.

Back in March of 2015, Denise started to have a very weird, pinching sensation in her lower right quadrant.  5 years prior, Denise had gone through a hysterectomy that was caused due to endometriosis and she wasn't sure if it was something associated with that or just a pulled muscle.  The pain did finally get bad enough one morning that we did run to the emergency room.  While we were there, the doctors did do an ultrasound on the area and couldn't find anything.  They gave her some medicine for the pain and sent us on our way.  The pain came and went all summer.  We also thought that it could have been the bed as well.  But in late October, the pain got REALLY bad.  So much so that she drove herself to the emergency room.  After she got there and described the symptoms, the attending doctor ordered a CAT scan to get to the bottom of what was going on.  The scan came back and a mass was found.  The attending surgeon to the ER also looked at it and knowing her history, wanted to operate.  The running thought was that it was possibly just left over from the endometriosis that had reformed.  So on the day before Thanksgiving, her surgery day, the doctor told us that he wanted to get in and take a good look around to make sure there wasn't any other growths or irregularities.  After a couple of hours, I was called to the consulting room and was told that the surgery was a success.  At the time, the surgeon felt that it was just what we thought it was but was sending it out for a biopsy.  
The next couple of weeks were tough for Denise.  She had a major scar from the surgery that limited her movement, so we had to take things slow.  We met with the surgeon for a follow up, but had no indication on any further updates on the biopsy.  Denise called a couple of times, but was told they should have the results until her next appointment.  So thinking that there wasn't anything to report, Denise took herself to her appointment and I stayed at work.  I should have went. She was told the news.  I can't imagine what it was like for her to hear the news by herself.  She called me at work and I know how I took the news.  Like my soul got kicked in the nuts.  We both agreed we're not going to sit on this and start looking at what to do.  The first thing was to tell our kids.  They took it surprisingly well.  But now, we had to get an appointment with a cancer doctor on what we were going to do next.  
We live in a more rural part of Ohio, so treatment options are kind of limited to the local hospitals.  That was our first stop.  Denise was able to get an appointment, but it was for December 30th, two weeks after finding out.  I didn't want to wait and asked her to please call the Cleveland Clinic.  On Friday of that week, she did and we got an appointment the following Monday.  
I'm so glad she made that call.


Denise with our friends, (L-R Mandi, Jen and Lee)
Welcome to our blog.  This site is dedicated to my wife, Denise.  She's the one in the center, seated.  This blog is dedicated to her discovery and treatment of Leiomyosarcoma.  It's something that took us totally by surprise and something that we were fortunate enough to start fighting right away.  My hope for this site is two fold.  First, a journal of the road ahead of us and second, that someone may trip across it and find some comfort/hope/inspiration for their fight.