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!