Another birthday

Today we celebrated Denise's birthday.  We could because she's still here.  She fought the battle and won.  I haven't updated the blog in awhile as there hasn't been a whole lot to update.  Denise continues to recover from chemo and its after-effects, but every day she gets stronger both physically and in spirit.  

In the beginning of October, we did have an appointment for a follow-up with her cancer doctor, Doctor M.  It was a typical get up there early, go for a scan and then wait for the office visit.  There's always that tension and anxiety between the cat scan and the meeting, but luckily it was only about an hour or so.  When we went into the office, Doc M and Nurse J came in and right away gave us the awesome news that Denise remains cancer free!  He followed up with an exam and didn't find any problems at all!  So with that said, Denise has one more follow-up visit in February and as long as everything is good with that, we won't have to return to the clinic until the following February and  will continue on the yearly cycle.  That will also mean that Denise will be able to get the port removed from her, which she is very happy about.  Especially with our grandson.  You see, he seems to target that thing all the time when he gets grabby and it hurts.  But it's all good.  

Denise got to spend the day with her inspiration, celebrating another year.  And for that, we are truly thankful and blessed.  

Gideon

The night before her first chemo treatment, we found out that we were going to be grandparents. That gave Denise the power to fight and beat back the cancer to reclaim her life.  It wasn't ever an easy battle, but she did it.  On Monday morning, September 12, 2016 at 3:52 am, 253 days after the news, she was in the labor room and got to witness him coming into this world and into our lives.  I have never witnessed a greater joy in her eyes then we she came out to get us.

Thank you, Gideon, for coming into our lives and giving your grandma hope to fight a sometimes difficult battle.  

That time when we went to Ireland

I have been neglectful of the page as of late because, well, I haven't had a whole lot of news to share.  Well, that it until now.  If you have been following along here, you know that back in May we were told that we were going to be guests of some wonderful people in Ireland.  On July 31st, we started our adventure and what a grand adventure it was.  We spent a week in Northern Ireland seeing all the raw beauty that country has to offer, plus we got to visit where my grandfather was raised.  My biggest fear for Denise during this trip was her ongoing bouts of afib.  Since the chemo treatments, she has had afib on and off and it's been a struggle to find the right combination of medicines for her to keep things in check.  But on our journey over there, not one instance occurred.  Trust me when I say this, this wasn't just a sit back and relax vacation either.  We got out and saw things and walked places that tourists don't normally go along paths and trails that hug the ocean.  It was a beautiful time.  And Denise, she was a champ!  She got to nap in the car every now and again, but wow, I am impressed with her stamina on this trip. 

So if you didn't see my Facebook post thanking you all that were involved, I will say it here too.  Thank you!  Thank you for helping bring the spark back to my wife's eyes. Between our son's wedding, this trip and the soon to be born grandson, my wife is truly a warrior who has fought her way out of the darkness and back to herself.  I've included a link to the images from our trip below.

A day of celebration

If you follow along here on the blog over the past several months, you may remember a post I wrote back towards the beginning called "Twas the night before chemo".  That was the night before Denise's first treatment and when we learned that we were going to be grandparents.  

But with the bun in the oven, the kids decided to hurry their wedding date along a year and have the wedding this summer.  This past Saturday, July 9th to be exact.  It was a beautiful ceremony and day and was a true reflection of the love that Alex and Laura share with each other and with their soon to be born son, Gideon.  For Denise, the wedding and baby have been nothing but encouragement to get through her treatments and heal up so that she could celebrate the joys that life have given her.  She put a Tweet out the other day that sums it up best:

These events were what she needed to continue her fight and were her glimpses of hope in her times of struggles.  

She got to dance at her son's wedding.  And she couldn't have been more radiant that day, either.

You can view the entire set of images here if you wish.

For now, besides the birth of our grandson to look forward to, there is this!

Where do we go from here?

I know.  Ireland!

If you have been following along on the old blog here you know that a group of some fantastic human beings put something together for Denise and myself. A once in a lifetime trip to Ireland.  But, there was two things holding us back.  We needed to make sure that Denise was done with chemo and also that her cardiologist felt that everything was good with her afib.  But let's rewind to yesterday first.

Since the beginning of this year, Mondays have come to mean two things.  First, Archer reruns on Comedy Central and or course chemo.  But for the past several weeks we hadn't gone to chemo because Denise finished her cycles.  So when we got in the car yesterday and made the trek north to the Cleveland Clinic, it was like getting back into the swing of things.  We had to go early because it was Denise's follow-up CAT scan first thing then meet with her oncologist to go over the results.  As you can imagine, Denise was pretty nervous about the whole thing.  I was too, but, didn't want it to show.  "What if it came back" was the thoughts on our minds.  So after the scan we had breakfast and awaited the doctor at 11.  We decided to go check in with him early in hopes we could get it over with quickly.  We were in luck.  About 10:40 he popped out in the waiting area and called us back.  He took us in a room, sat down and started asking Denise the usual routine questions.  Then he stopped and said, "Oh, by the way, the results of the scan are clean, you're good", then continued on.  He knew we were nervous.  Talk about a weight taken off our shoulders.  When he was done we asked if we are okay for travel and he gave us a thumbs up!  He rushed off to care for another patient and I forgot to ask the most important question, is she cancer free?  J, the nurse practitioner and Doctor M's right-hand/enforcer was also in the room and I asked her, "Can we say the words cancer free".  A huge smile filled her face and she said yes.  My heart lept with joy!  You could just see the expression on Denise's face change to one of peace.  She did it.  She kicked it's ass!  As we were driving away from the clinic, it hit me hard.  I was finally able to step down for a few minutes and let go of everything I was holding back for 8 months.  Boy did that feel good, but not recommended when driving through a major metropolitan area.  I get to keep my wife, my best friend for a while longer.  Cancer was not getting her.  So to celebrate we headed off to one of our favorite restaurants and afterwards take a leisurely drive through the Cuyahoga Valley National Park.  We stopped at Brandywine Falls and went for a little walk.  This picture of us describes it best.

  Our friend Mandi commented "I've missed that smile and light in your eyes, Denise! So glad to have you back!"  You're not the only one, Mandi ;-)

So now that we had the oncologist's blessing, we still needed to talk to the cardiologist.  Luckily, Denise had an appointment at his office today for a follow-up EKG.  But when we got there, we found out he wasn't in the office until the afternoon.  We told the nurse the plan about Ireland, but we were afraid to commit to a schedule until we got his thoughts on going into a pressurized cabin 40,000 feet into the air for several hours.  She promised that she would ask.  Also, her EKG is perfect. 

Well, we got the call a little bit ago and we got his blessing.  So....

We're going to Ireland.

With that news, I sent a note off to the peoples over there to get the ball rolling.  A BRILLiant travel agent needs to be consulted first. Wow.  Holy crap.  We're going to Ireland.

But like these events of the past several months, I want to capture it all somehow.  I want to make sure I have a forum to catalog and list out all the details of this once in a lifetime blessing.  

However will I do that?

Wait.  I have an idea! (<---click there!)

Just rolling along

It's been a few weeks since our last update here, so I figured I would dust off the old blog and give the latest.  Well, there really isn't a whole lot.  Denise continues to be on the mend from her chemo.  The biggest problem is still with her legs.  The water is beginning to shed itself off and her feet are returning to normal, but her legs still get sore from time to time leading to discomfort.  The afib is easing as well.  Her cardiologist gave her some different meds and that seems to be having a positive effect on her.  She's been back to work more regularly too the past couple weeks and as she loves her job, that has done a lot for her spirits.   She's also using a technique a former coworker of mine shared with me.  She too had a battle with cancer over this past year and had returned to work before I left.  Her advice to Denise was to nap at lunch.  There's a meeting room where Denise works that is normally not in use so she's been ducking away in there and catching some sleep over lunch.  She's saying it REALLY helps.  Thanks for that tip, Diane!
(Truly, if you need great vet care, drop me a line and I can give you a referral.) 

So with things on the mend and her getting back to life that's the new normal, we can start concentrating on the important things.  Like our sons wedding in July, hopefully the trip to Ireland to follow that and the birth of our grandson in September.  Still seems weird to me to say, "our grandson".  

Our hero seen here baby clothes shopping!

Not that I am opposed to the birth mind you, not one bit, just the fact of I've now gotten old enough to be a grandparent.  When did I get old?  She, of course, is ecstatic over the fact of being a grandmother and wanted to go clothes shopping for him this past weekend. 

Anyways, we are still on track for the June 6th appointment for another scan and follow-up appointment and hopefully then we can start moving past this stage completely and on to the future. 

So that's it for now.  Hopefully will have some good news to share in a couple weeks, but for now we'll just keep rolling along. 

"Andy - you there?"

This has been an incredible week.

Last Monday we celebrated our anniversary by going for a post-chemo check up scan.  Then on Tuesday afternoon we got some fantastic news that we weren't expecting.  But let me give you some background first for those that are not familiar with things.  

For the past 17 years of my professional career, I have administered and used products made by IBM namely the Lotus Notes/Domino tools.  Over my career I was fortunate enough to be able to attend a conference that was held every January and centered around those product.  Through that conference, as well as by blogging and participating in social networking, I have made a lot of great friends all over the planet. The people that I met in this community are some of the nicest people you would ever want to know.  Just regular folks with a passion to share their knowledge and love for the products that provide for them as well as a passion to just be excellent human beings.  It's hard to describe this group because in my journeys through life I have never met a group of people like this. They have always been there for me when I've been stuck with a problem or provided help through their own blogging and sharing of things they had come up against in their daily struggles.  Every year at the conference people would fly in early or stay after just to hang out with each other.  A year ago when I wasn't able to attend they had me come down with my photography gear and do headshots.  It's truly a great group, I can't stress that enough.  So I think you get the point.  Now back to our story.
Last Tuesday afternoon I was sitting in the living room with Denise when I got a message on Facebook from Paul.  Paul lives in Northern Ireland not too far from where my grandfather Patrick was born.
The elaborate ruse begins.....

So we jumped on Skype and Paul was telling me about a problem another friend of ours, Steve, also from Northern Ireland, was having with IBM Traveler.  That software is used to get email, calendar and contact information to mobile devices from the corporate backend.  One of the products I've spent a bunch of time on.  So Paul added Steve to the Skype video call and we started to troubleshoot the issue.

Paul recorded the conversation

It seems that Steve was having problems with people from the US coming over to visit his company's location and when they get off the plane they cannot access the servers any more.  The phones won't communicate with them, etc.  So I put my troubleshooting hat on and started giving suggestions on things to try, what I've seen in the past with my experiences with people going overseas, etc.
After about 10 minutes, Paul begins to ask me what my cell carrier is.  I of course start spouting off that information and then I'm asked what phone I have.  I tell him that it's an iPhone 6 plus.  He then asks about what Denise's phone carrier and type is.  I tell them.  I'm then asked by Paul, "Is there any way you can get your phone to us?"
That's a puzzling question.
"Um...no, I need it" was my response.
"What if you brought it with you" asked Paul.
"Those are the two phones we need to test" says Paul.  "So, why don't you and Denise come over and we can test those phones?"
The conversation then continued with talk about Denise's current health and when she could travel.  I told them that it's going to be a slow process likely and we just have to wait and see.
Paul then says, "That's what Molly told me when we talked earlier" and the conversation continued.  It took me a second to realize what he had said.  Molly?  Wait, my Molly? My daughter?
I called Molly into the room and interrogated her asking if she had been talking to these two.  I then reminded her of "stranger danger".
The gents went on to tell me that they have been conducting a fundraiser behind our backs.  It was called #supersecretsquirrel on the social medias.  It appears that they had set up a fund in Paypal and asked other community members to donate.  They did. Denise and I, to celebrate the many things we've gone through over the past several months, are the fortunate recipients of a paid vacation to Northern Ireland to stay with Paul and then Steve and then to Dublin with Eileen.  I called Denise into the room and they told her.

I love the look on Denise's face when she's hearing this

As you can tell from the picture above, Denise was in a state of shock.  We've always talked about going over there one day.  I had never met my grandfather as he had passed away before I was born. My dream was to one day go to Northern Ireland and see where he was born, baptised and raised. I've always wanted to have some connection to him.  Well, now I get to have that.  Holy crap, we're going to Ireland!
I again cannot thank the community enough for this blessing, because it truly is that.  You all are an incredible group of people that words cannot even come near to properly communicate the level of gratitude both Denise and I have for you all.
Yes, cancer has been a bitch.  Yes, the recent things that have occurred professionally have not been great.  But having something like this to look forward to has just been amazing beyond words.
Our sincerest thanks to Paul, Steve and Eileen for getting this thing together and for being our hosts. Our sincerest thanks to ANYONE and EVERYONE who donated to this in any way.
People have said numerous times in the community and it's held true, it's not about the software, it's about the people.  Well, thank you IBM for making the software that introduced me to these people and have made them a permanent part of our lives.  We are truly blessed because of it.
Now as for Denise, it appears the swelling that has been a parting gift of the chemo is starting to finally subside.  We also have to go back on June 6th for another scan and follow-up.  So hopefully this is a sign that we can soon board a plane and head off to what will be an adventure of a lifetime.  
Again, THANK YOU to everyone that is a part of this.

6 Weeks

Denise had her follow-up CAT scan and results meeting with the doctor today.  The nice thing about this visit was that we were able to do both things the same day!  We had to get up at stupid o'clock and head out the door to make it there for her 7:30 AM appointment.  Driving into Cleveland is a crap shoot during rush hour and we didn't want to take any chances.  We got there plenty early enough and they took her right back and got her prepped.  The scan went well and then we had a couple hours to kill before her other appointment.  

When it was time for the appointment, the doctor came in and right away told us the results.  

Nothing new on the scans!  

Everything was just as it has been on the last couple scans, no changes, nothing new.  But, he wants to play it safe and do another scan in 6 weeks rather than 3 months.  There's a few areas he wants to keep his eyes on just to make sure there's nothing to be worried about and he seems confident there isn't anything to worry about, but he wants to be sure.  Also, her blood numbers are getting back into shape properly, so that is a good sign!  Her white blood counts have been rising faster than gas prices, but they are on the way back down.

So for now we are playing it optimistically happy, but, have to wait until the next round to know for sure.  At least for now he said that she no longer has to go through any more chemo, we are done! Hopefully for good!  The only ongoing concern is the amount of water she is still retaining which is a known side effect of the chemo.  Hopefully that will go down because it's causing her a lot of uncomfortableness when she walks around.  Her muscles feel pretty beat up from it all.  

So with that news, we headed out the door and went to enjoy a lunch to celebrate our wedding anniversary today.  Hopefully between now and June 6th her life will start getting back to normal.  For now, we'll just take it one day at a time.

Editors note: The Cleveland Clinic has a REALLY good cafeteria.  Pancakes, good ones too, only .69 cents each!  A steal!  That's how we passed some of the time between appointments. 

The end of some things, the beginning of new things.

(Hit Play!)
Well, we made it through another week without a hospital visit!  Denise was discharged from the hospital on Sunday of last week.  She received two units of packed blood cells via a transfusion because her red blood cell counts dropped to 8.  By the time we left, they were back up to 9.6 and she was looking and feeling much better.  While she was in the hospital, we talked at length about continuing with the 6th round of treatment or taking the option the her oncologist said we could and just forget about the 6th.  We decided that we were going to tell him that we prefer to just skip it.  The plan was to have our normal meeting with him tomorrow, Monday, and just say that we've had enough.  But they beat us to the punch.  They called us this past Friday to let us know that he didn't feel comfortable with doing the treatment and we'll just go with scans and follow-ups from here forward.  So, I guess we can say that we have come to the end of this chemo adventure.  Hopefully for good.  Now we will visit the clinic hopefully one last time for a while next Monday, the 25th, for scans and a follow-up appointment.  Hopefully.  Especially since I've come to the end of another road at my now former employer, so insurance coverage is going to be an issue for a bit.  But as we've learned over these past several months that we are stronger then we ever thought we were and we can get through just about anything.
We have new roads that we have to travel now, one to healing and one for a new career.
We got this.

It's all uphill from here. Hopefully.

We had that gut feeling again.  

This week was our visit with our old pal Taxotere.  To be honest, I don't think that Denise had really even fully recovered yet from her last Taxotere treatment a couple of weeks ago.  But we went ahead and had the treatment as scheduled and like I stated in the last post, Doctor M said that 5 treatment cycles is what he really wanted.  So all week I worked from home because she was really dragging badly and needed someone to keep an eye on her.  No energy what so ever, dizzy, lightheaded, heart racing like she ran up three flights of stairs and all she did was walk across the room. Basically a mess.  As our history has gone with post-Taxotere weeks, Thursdays are the days when things start to happen.  This week was no different.  I was working in the office and Denise had me put the pup in the kennel so should could go take a nap.  She wasn't asleep too long when she got up and said that she could feel the afib coming on.  As her cardiologist Doctor G had said last time this had occurred, she needed to take her "pill in the pocket" Rythmol.  Two when it first occurs and then two more an hour later.  We took the first two and waited.  Her heart was still acting like Napoleon Dynamite dancing at the talent show. The next hour, the other two. Things started to calm down a bit so we thought that might be that.  So she had a sandwich for dinner.  Then it started up again.  It was time to head down to the hospital again.  By the time we got there however, the heart had gotten itself back into regular rhythm.  The ER staff wanted to play it safe because anytime she got up to move, she was getting super dizzy and very light-headed.  They also drew a bunch of blood and took a urine sample with his history of UTI's that occur these weeks.  After a while they came back with the results.  Major UTI forming and her white blood cell count was really high.  The afib might have been a blessing in disguise actually because she was having none of the normal symptoms that were the "tells" that the infection was coming on.  They started her up with an antibiotic drip and admitted her.  We were both relieved with that.  Last time they sent us home and we didn't want another innocent of having to come back in an ambulance a couple of hours later.  It was after 11 PM at this point and she was settled into her room for the night so I headed home.  

On Friday morning she sent me a text

Her morning blood tests had shown that her hemoglobin level had dropped pretty low.  With her constant fatigue, the afib and the UTI, they felt it was time to do a blood transfusion.   So this afternoon they brought in a bag of packed red blood cells to help to her levels up.

I checked in with the oncology team up at the Clinic and they were cool with the procedure.  It's not uncommon for chemo patients to have to do it.  Only took about two hours for the bag to be drained. Hopefully this will help get her numbers moving in the right direction, but we won't know until tomorrow after her morning blood draw.  

So where does that leave us?  For now, she's where she needs to be.  In the hospital under observation.  If something else goes wonky, she can get someone to help her out and they can address it right then and there.  I'm planning on getting up tomorrow morning and heading down to stay with her.  She at least has a really nice room this time.  Used to be the hospice room but since a local hospice house had opened they never use it anymore except for patients.  It's like a hotel suite in there, except it's in a hospital.

The real silver lining tonight was Molly's friends Noah, Justin, Caitlin and Austin.  They made us a huge rigatoni, garlic bread, salad and cookie feast and brought it down to us.  Those kids are awesome.  Well, they are band kids after all, so, that alone makes them awesome.

I'm hoping that now that the Taxotere is in the rear view mirror, she can start the healing process.  We still have the option of doing just the Gemcitabine treatments, but right now that's not looking too enticing.  Hopefully this is the last of the bumps in the road.  Hopefully the rest of our journey will be all uphill from here.

Hopefully.

The End?

The last Taxotere?

Well, we got some interesting news today.  We're up here in Cleveland at the clinic for her treatment, the big week with two treatments, and Doctor M is confident that this, the 5th round of chemo should be sufficient to combat the cancer!  So, we could:
1.  Be done
2.  Just do the first week of the 6th cycle and get the normal 1 Gencitabine treatment
3.  Do the 6th cycle with two weeks of Gencitabine and no Taxotere
We talked about it for a while with the doctor and we landed on this action plan. As I stated above he feels very confident that 5 rounds of chemo is enough to kill off this cancer.  He doesn't have any data that suggested we must complete 6, but 5 should be good enough.  We however figure if we can do at least the 1st week of cycle 6, we would feel better and he frankly has not problems with that and supports that approach.  BUT, since this is week 2 of the cycles, this is historically when things go wonky for Denise.  Already these past couple of weeks the water retention has gotten pretty bad and she is up about 25lbs in weight just from the water. The plan for now we are going to wait and see.  If she makes it through this week without incidents of dehydration, UTI's or a frantic heart, then we are going to go with one more Gencitabine treatment.  If, however, we run into problems, then we may hold off or cancel all together.
We know we're not out of the woods yet.  There is still a lot of road ahead of us but at least there is a feeling in our hearts that there is even more road behind us.  She's got a new round of prescriptions called into the pharmacy so on our way home tonight we'll stop and get those.  Hopefully we can get rid of all this excess water in her system because that's the big stress on her system now.  If that can get regulated, then hopefully other things can get working and her healing from this can begin.
For now, we celebrate!

The second to last round has begun

As with most Monday's since the start of the new year, Denise and I ventured north to the Cleveland Clinic this morning.  Today officially started the second to last round of chemo for her.  The difference today is that our daughter Molly came along for the ride.  As with most 11th graders, she's not sure what career path to follow in life, so she wanted to come along to see what it's like at a world renowned institution like the Cleveland Clinic since nursing is beginning to become appealing to her.   She also wanted to see what it's been like for her Mom since the start of all of this.  I'm glad she did join us because the nurses there spent time talking with her and telling her some stories.  I think that might have cemented her desire to take up a noble career as that.  I don't know if I've said it on here, but I know I've said it aloud to others; nurses are the true heroes of medicine.  I saw that first hand when I  was in the hospital for my back surgery 11 years ago and then with Denise's recent visits.

Aside from watching Molly's wide-eye enthusiasm, we met with Doctor M today.  He's been kept aware by us on Denise's recent issues and wanted to make sure everything was okay.  The plan right now is to continue on with 6 rounds of chemo.  If however next weeks Taxotere round takes her out again and causes her more hospital time, he may cancel the last Taxotere treatment and just finish up after this round.  We will see.  Of course Denise and I are hoping to do all 6 to make sure this cancer is beat, but at the cost of her overall health, it's a slippery slope.  The good news also today was that with Denise starting to take iron supplements regularly now, we saw a marked increase for the better with her blood numbers.  So that is a good thing.

Before her normal chemo appointment though, Denise got to have what every women, (and even some men), get to go through regularly.  A mammogram.   Now I'm not going to go into detail, but let's just say that took longer then it normally does and she was in a very foul mood afterwards.  I'm sure you can fill in the blanks 

Now, we wait.  Hopefully this weeks single treatment will go easy on her like normal.  And with all of the things we've learned over the past several weeks, hopefully we can do enough prep for next weeks visit and not have it take as hard of a toll on her as the previous ones have.  We can hope.

Revenge of the Taxotere.....

Another round of chemo behind us.  Only two more cycles to go.  But with every cycle of chemo, the second is always been the one that we worry the most about because that's the one with Taxotere.  This week was no exception.  On Monday we spent another very long day up at the Cleveland Clinic.  Denise got all settled in for treatment and I settled in to try and get what work done I could for the day job from there.  Things went like normal and there weren't any problems.  The only thing different at the start of this week was the fact that Denise had put on a lot of weight from water, over 15 pounds.  They gave her a water pill to take so we hoped that would help get things back in order.  The rest of the week went like normal, just really run down and feeling kinda blah.  The extra water weight really made her tired easily and walking even around the house was becoming more and more of a chore.  Thursday, it started to get worse.  Denise put a call into her cardiologist because of it and also because the clinic team was a little worried that the water pill may have been putting too much stress on her vascular system.  I had already planned on taking Friday off in hopes we could get Denise into a doctor and I'm glad I planned ahead.  I think I am getting a sixth sense and/or jedi premonition about things with her health.  Unfortunately, I was right again.  3:30 in the morning Friday, Denise woke me up.  She had gotten up to use the bathroom and she could feel her heart racing like it did when she had afib when she was in the hospital for her infection in January.  We waited a little bit to see if it cleared up on it's own, it didn't.  We got dressed and rushed down to the hospital.  They took her right in and hooked her up to monitors.  It was a full on afib attack.  Her heart was beating fast and irregular.  Watching her monitor, I could see it.  Her blood pressure was okay, just the heart had gotten itself out of rhythm again.  The likely culprit was all the extra water weight in her system.  They put her on IV and started giving her a drip of medicine, ( I can't recall the name), to help get things back in order.  After a couple of hours, it started to and then suddenly it was just fine.  They then gave her 4 pills of another medicine called rythmol.  They were ready to send us on our way, but I asked if we could just hang out and have her monitored.  They agreed and after another hour, things were still good so they sent us on our way.  I asked before we left if it was okay if she could take all her normal BP and diabetes meds and they said that shouldn't be a problem.  My spidey senses went off, but thought that they knew better then me, so we went home.  We got home about 10:30 and we took it easy in the living room.  She had taken her meds just before and quickly passed out asleep.  After a few hours she woke up and said she wasn't feeling good at all, really nauseous.  She got out of the chair and was making her way to the bathroom.  She stopped and sat down in another chair and began to get upset.  I came over and tried to talk her down, but I could tell something was going on.  She got up and I got behind her to help her to the bathroom.  I had a firm grip under her armpits and she started to stumble and then start to fall.  I guided her down to the floor gently and had to snap her out of it.  She passed out for a quick moment and her lips were turning a little blue.  I got her up and back to a chair and that's when I called the ambulance.  I wasn't going to risk trying to get her to the car and to the hospital this time.  Called 911 and within minutes a truck pulled up out front.  A few firemen were up the street from us when the call came in and came over to start the pre-work of checking her out.  

They checked her heart right away and everything was beating just fine.  It seems like the mix of medicines she had in her system once again started to play hell with her and caused her to pass out.  Moments later, the ambulance pulled up our front and they brought the stretcher in.
Back at the hospital, Denise got hooked back up to the heart monitors and everything was good there.  Her BP wasn't great, but it wasn't bad either.  After some more blood tests and consulting with the ER doctor and the cardiologist, they decided to keep her overnight for observation.  Which was a good thing. Not that anything happened because it didn't, but just to keep her on the monitors all night and make sure her heart doesn't freak out again.  
Today, Saturday, I headed back down to the hospital to see her and hopefully get her.  Her cardiologist came in and we all talked.  He said that it's likely all the water weight is to blame for this latest afib episode and then the passing out came from the cocktail of medicines she got to combat it. He also pointed out that her red blood cells are getting pretty low, thanks to the chemo, so anything that hits her, hits her hard.  The doctor recommended that she start taking iron and that can help combat that.  He also gave her a prescription of rythmol to have on hand in case her heart starts playing crazy again.  A "pill in the pocket" is what he called it.  I guess that's like Barney of Mayberry carrying around a bullet in his pocket. In case of emergency, it's there.So with that, we were on our way back home.

The beagles were of course happy to see that she had returned home, so we settled into another Saturday.  But, as luck would have it, another urinary tract infection began to make it's presence known.  Of course.  It seems like anytime she gets a taxotere treatment, one of those pops up as well. Ugh.  She made a call up to the clinic and they called her in some more antibiotics.  So now our kitchen is beginning to look like a pharmacy.  Hopefully now she will get on the mend and things can get back to a little normal, just in time for the next cycle to begin and we can start all over again.
Taxotere is a predator.  It looks for the bodies biggest weakness and goes after it with a vengeance.  It's been successful at taking her down, hard the past couple of times.  There are two more rounds to go, so I am hoping that we can make it through that without any further visits to the local ER.  I'm just going to stay hopeful about that.
I'm wondering if just next time she's going to spontaneously combust.  I think that's the only thing we have yet to have happen.

The day we got good news.

We got good news today.  We are officially half way through treatments!  Denise had her CAT scan imaging last Monday on our "off" week so we had to wait until today to get the results.  That has made for a VERY long week.  As per our normal procedures, we got to the Clinic early and made our way up to the 8th floor.  We got called back and she got her vitals checked.  Her blood pressure is back to normal as well!  Getting off those extra meds this past week has made a world of difference.  She's been much more active and doesn't get as tired as easily.  Such a good thing to have her "back".  Just seemed like she was in a fog when she was on all those meds.  We had to wait for a little bit for Doctor M to come into the room.  He came in, sat down, looked right at her and said, "Your scans were perfect".  I was in tears.  She was in shock.  I think we both spent the past week waiting to hear the worst and we got exactly what we had hoped and prayed for.  So the plan for now is to complete three more cycles.  Two weeks of chemo, week off, repeat.  That means that our last treatment should be on our wedding/first date anniversary.  I think we also know, but won't admit at least now, that we know there is still a lot of road ahead and will probably have some bumps along the way.  But at least for now, there is light at the end of the tunnel.  I cannot wait for that last day to get here.

I'll keep updating the site along the way.  Thanks to all of you who follow along and for your positive thoughts/prayers/positive light and energy/karma/encouraging words/most importantly LOVE.  That has meant the most to us through this.

Onward.

Now if I can wrangle the remote control away from her as she's sleeping, I can change the channel from Friends. Ack.

Remember that time we went out to eat a couple days before your CAT scan?

Denise 2/24/2016

Well, the third cycle is now officially behind us.  That of course doesn't mean there weren't any problems.  We thought we made it out of the woods with this one.  Made sure that she had plenty of fluids and kept up with her meds.  But the weeks where she has her Gencitabine and Taxotere are the hells weeks.  She held up pretty good at the start of the week, but Thursday she started feeling a pretty crummy.  By Saturday, she was feeling up to getting out of the house and go grocery shopping with me as well as a bite to eat.  So we headed into town and stopped for lunch at El Pappa's, (local Mexican restaurant).  We were enjoying the chips and salsa and it started to happen.  Right after our food arrived.  It came out of nowhere like a freight train.  I could tell something was going on because she just stopped eating and was looking weird.  I asked her what was wrong and she told me that she was feeling woosy.  Then she started having a panic attack.  I jumped out of my seat and moved the table out of the way.  The wait staff and owners rushed over ready to call 911, she told them no and then she just passed out, unresponsive for what seemed like an eternity, but was only probably 10 - 20 seconds.  The weird thing is how quickly she bounced back.  She immediately became responsive and started getting color.  One of the fun side effects of this whole journey is what it's doing to her blood pressure.  It keeps dropping out of nowhere.  And that's what happened at the restaurant and tack on the panic attack, well, let's just say it sucked.  Badly.  But with another visit to the cardiologist today, we all figured it out together that her constant low blood pressure is due to the increased blood pressure meds she's been on since she landed in the hospital and had the afib episode.  At least now the cardiologist is taking the approach that, to paraphrase, "he was treating something that happened once, hadn't happened again, then why continue to take such a high dose of medicine?"  So with that, he told her to cut back on what meds she is taking to the levels she was taking before things went wonky and we'll go from there.  Hopefully this will get her back on her feet.
Yesterday was a big day, the follow up CAT scan.  The original plan was to have three cycles of chemo then scan.  Yesterday was that scan.  We won't know the official word until we see the doctor next Monday, but, we did hear back today that there's nothing new.  Of course Nurse Practitioner "J" doesn't want or can give everything away over the phone, but Denise said she sounded positive in her voice, so we'll take it as "good news".  We know we have more chemo in front of us, at least 3 cycles, but hopefully this is the beginning of the end of it.  So at least we don't have to go through until next Monday thinking the worst.
With Doctor M's help though we should be able to get through this.

Cycle Three, engage.

Well, here we are, the beginning of Cycle 3 of chemo.  To say the first two were easy, well, they weren't.  The good news is, we are at the start of the half-way point!  We get through these next two weeks of treatment, then some imaging before we start the next round to get an idea of where we are and where we're going.  So hopefully, the imaging will come back clean and we have no changes to the regimen.   But as I am learning with chemo, you can never plan ahead.  Seems like any times I say, "hey, we get there early, get in and treated and we're out the door!"  Well, today is another reminder of that just doesn't happen that way.  You see, Denise has to have blood drawn before every treatment and when she did on Friday, her white blood cell count was pretty high, so they wanted to do another blood test before her treatment. And they are running behind.  Nothing against the lab team, this is a busy place, but just proves the point that this whole process goes at it's time, not ours.

So anyways, were did I leave off?  Quick review of the blog, ah yes, the port installation.  There's really not a whole lot to report with that.  It was on the first treatment of the second cycle and was not much of an event other then Denise being awake the whole time.  After the port installation, it was back across the campus to the other building we have chemo in and then we were out the door.  She was pretty sore for the next couple of days, but returned to work that week.  But in the back of our minds we knew that the big "two treatment week" was just a week away.  Last time we had the two treatments, she ended up in the hospital.  So this time I tried to get her to drink water as much as possible.  But with her sleeping so much, it was hard for her to keep up with the fluids so we were heading down the path of urinary infection and dehydration.  Denise put a call into our general doctor and got a prescription called in.  That might have done the trick because we stayed out of the hospital this time.  But for the next week, she was just nuked.  Sleep and a lot of it.  She was also having a lot of light-headedness too, but they think that got that traced back to her blood pressure medicines and they cut those back.  She also got a clean bill of health from the cardiologist too!  The heart monitors did pick up anything abnormal and the echo cardiogram they did on her heart was good as well! The cutback on her meds seems to work as she is not having a problem with dizziness any longer.  Luckily, she made it back to work this past week for a few days and seemed to tolerate that, but was pretty tired when her shift ended.

Taking care of a chemo patient is interesting experience.  I guess my advice for someone that is going to be one is to throw out plan making.  Just go with the flow.  Like the joke goes, "How do you make God laugh?  Tell him your plans for the day."  The same holds true here.  

Want to share a cool story from last week.  I was working from home keeping an eye on her and I noticed the mail truck pull up the drive.  I went out to meet them and she handed me two boxes.  One from Ireland and one from South Carolina.  You see, before I blogged on here, I had another blog and was part of a community of liked minded people that met once a year in Orlando at a software conference.  Over the years, I have made some very good friends through this community and two of them sent along some care packages for Denise.  We were blown away.   So Susan and Steve, again, thank you from the bottom of our hearts.

So, that's it for this update.  Denise and I want you all to know that we really, truly appreciate all the prayers, thoughts, positive vibes, good mojo headed her way.  It really means the world to us.

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.

Round One: January 4, 2016

This winter was suppose to be an El Niño 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.  

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. 

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.

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.

Welcome

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.