Today I was scheduled for my monthly Zometa infusion.  This one only takes 20 minutes, so mentally I was prepared for about a 1 hour visit.  WRONG!  They test my blood prior to the treatment and it took 2 hours to get the results.  But, I made the best of my time by talking with some really nice people who were sitting in the chairs on either side of me.  So it wasn't the most convenient visit, but not too bad.

 

I got home around 3 and inhaled a sandwich - my first food of the day.  The temps are a little chilly today so I made some gingerbread cake.  Waiting for it to finish baking and then I'll munch a piece (or 2 or 3!).  I made half a batch of oatmeal raisin cookies the other day and they almost lasted 24 hours!  Just couldn't help myself.

Talked with my GI nurse today and described yesterday's symptoms.  If it happens again, I'll have to go in for another ERCP.  So much for an easy procedure.  I thought the last one was the easiest one yet.  I may change my mind soon.

 

Treatment visit was ok.  I had to wait about 90 minutes before they hung my drug, and then it was another 90 minutes of treatment.  So an appointment that I thought would take 2 hours actually took closer to 4 hours.  The infusion nurse asked me if I considered getting a port.  She looked me in the eyes and said, "you really don't have much to work with".  Meaning I didn't have much in the way of veins.  I tried to explain that when I leave the clinic I don't like to have any evidence of treatment.  Have a feeling we'll be revisiting that issue again.

Woke up to pain in my upper abdomen (pancreas and liver area).  At times it hurt so bad it brought tears to my eyes.  Took more pain medication today than I ever have and all it did was take the edge off.  And the itchiness has started.  Both of these are symptoms of jaundice.  Not unusual symptoms for me - but very disappointing that they are starting in just one week after my last stent replacement.  I'll have to call the GI doc tomorrow to let him know what's going on.

 

Also have an appointment at the clinic for treatment - 90 minutes of drip, drip, drip.  This time I think I'll bring lunch.

Friday I went to a new hospital for my eighth ERCP.  I was feeling pretty down.  Al had to go back to work and I had to fly solo.  I knew I would be ok, but was just feeling vulnerable.  Met with anesthesia guy and he starts his "we'll take good care of you" speech and I had to interupt him.  I said I've had this procedure multiple times and each time they say they are going to make me comfortable and each time I end of waking up writhing in pain.  I feel myself getting upset and the tears start flowing.  He pretends he doesn't see them and assures me that they will start pain killers and anti-nausea drugs before I wake up.  After he walked away I shook off the tears and got mad at myself for being so whiney.  Take a few deep breaths.....  Time for them to wheel me to the procedure room.  He gives me a shot into the IV and says it's an anti nausea drug.  Well there must be something else in it because I can feel myself relaxing.  The staff in the procedure room goes about their business to get me ready to go.  Shot number two goes in the IV.  He said that this one should help me relax too.....ZONK  I was out in no time.

 

I woke up in recovery to a new sensation - nothing!  No pain!  No nausea!  Yeay new doc!  They wheel me to my room and Al accompanies me.  It was nice to be with him and we were both relieved that things went so smoothly.  I had some pain later that night and they were able to give me something to help (dilaudid).  That stuff starts working within about 15 seconds - good stuff.  I didn't sleep much that night and don't usually sleep well in the hospital.  I was discharged the next morning.

 

Strangely I'm feeling pretty down today.  I'm sure the move is part of that.  I miss having friends around me and haven't cultivated any new ones here yet.

Al and I sat in the living room, relaxing and watching the Phillies game.  I didn't feel great, but I didn't feel horrible either.  I had managed to go to the gym and make dinner but that was about it - with a big nap thrown in between.  It was kind of weird when we were on the sofa.  I didn't quite feel with it and flashed back to those last few months that mom was with us.  I remembered dad doing everything he could to make her comfortable - not an easy job because she didn't ask for much (sound familiar?)  And I just got to thinking, will I know when I am headed down that road?  Will it be obvious?  Or will it just be a series of getting sick, and recovering?  I hate the idea of putting Al in that caretaker roll.  He's done great so far, but it will get much tougher at some point.  A friend suggested I develop a relationship with a local visiting nurse group.  I may not need them right now but it would make things easier to get started if they already have some background on me.

Back when i was first diagnosed I looked at things differently and suddenly felt huge losses.  One day while we were at the mall we saw a little old couple slowly walking hand in hand.  I got so pissed!  I was angry that stage of life was taken away from me.  At the time I tought I would only live a few more years.

 

Well today we went to the DMV to start the process of getting our driver's licenses and registration changed to OH.  As we sat there we were surrounded by several other older couples - all patiently waiting.  I remembered back to that day at the mall.  Maybe I won't ever get to be a "little old lady" but Al and I will have plenty of memories along the way.  I was grateful to spend the time with him - even on such a mundane task - because it meant that we were hanging out together.

Fever and chills continued Tuesday night and restarted with a vengeance Wednesday night.  Starts with chills so bad that I can't stop shaking.  I get under the covers, pile on as many blankets and I can find and put the portable heater on high.  After 3-4 hours the chills convert to a melting fever.  Got up over 103 this time.  Went to the ER Thursday morning and they gave me fluids and a script for cipro.  Followed up with my oncologist the next day.  She asked if I made an appointment with my new GI doc yet.  I sheepishly say "no".  She gives me a heavy sigh and said that she can't fix the problem and offers to set the appointment.  GI appt set for Monday am - thank you doc!  When I feel lousy I become a pitiful advocate for myself.

 

Met with GI doc today.  While he is not as personable as my doc at Hershey, I was impressed with his knowledge.  We were able to schedule the next ERCP for Friday morning.  I should be home from the hospital by the end of the weekend.

Yesterday was my first day at the new clinic.  I was thinking about riding there, but just didn't feel too confident in finding a safe route.  It's only 5 miles away, but some sections are pretty congested.

I met with the oncologist first.  Very easy and routine visit.  She is going to see me every 6 weeks since I've been so stable.  In the past I saw the doc every 3 weeks and it felt like a bit of a waste.  Then on to the treatment room for Herceptin and Zometa.  Good news is that the nurse got the IV placed on the first try!  Bad news is that they run Herceptin for 90 minutes, where at Hershey they do it in 30.  I was hoping the whole visit would have gone a bit smoother, but I think they had to do some extra administrative stuff to get me in their system.  I was hoping for about a 2 hour visit, and it ended up being closer to 5.  I think it will go easier next time.  She will do a CT and Muga scan next month to make sure everything is behaving.

Also talked with my old GI PA today.  Betsy is just fabulous.  So helpful and encouraging.  She is going to fax my GI records to the doc here.  I'll call the local GI doc later this week to schedule a consult and ERCP.  My old GI doc and a chance to talk on the phone with my new doc and was very impressed with his credentials and training.  He thinks I'll be in great hands.  I hope so!

I am scheduled for my next ERCP mid November, the last one was Sept 2.  I usually get this done every 10-12 weeks.  This is the procedure where they replace the stents in my bile ducts.  Sometimes I get sick if the bile ducts are not draining properly and get infected. It starts with fever and chills and gets uglier from there.  Last night and this morning it started.  Bone chilling cold followed by sweaty fever - sounds fun right?  I'm actually hoping it's just some kind of bug (not the oink oink kind).  Thankfully my temperature fell back to normal earlier today and I've felt fine since then.

Today will be my last visit to my oncologist here in PA.  I've been going there regularly since March 2004.  My doctor is an older gentleman and at my last visit he asked how long I had been coming to see him.  I responded 5 1/2 years.  He smiled and said, "I was a young man back then!".  Made us both laugh.  I still remember my first visit to him.  He made it clear from the beginning that there was no cure, but that he would offer the best treatment possible while maintaining my quality of life.  I didn't really know what that meant when we started.  But, boy do I know what that means now.  I've had it fairly easy for a long time.  This year brought some bumps to the journey but not that bad.  Of course it's easy for me to say that today because I feel fine.  Catch me on another day when my bile ducts are acting up, or I'm recovering from stent replacement and I'll sing a different tune. 

 

It will be difficult to say goodbye to the staff today.  I baked some chocolate chip cookies to hand out.  Who doesn't like fresh baked cookies???  Next week is my last infusion appointment.  That one will be tough too.  Those nurses are fantastic.  They understand the seriousness of the illness, but don't miss a chance to joke, tease, or give me a gentle kick to the backside if I need it.  Somehow they can tell when I need support and nurturing.  It's as if they have all the time in the world to take care of me and listen, even though I know they have a waiting room full of people to see.  My doc is the same way.  When I say my goodbyes today I hope I can do it with a smile on my face.  I really hate getting emotional in front of other people.  Of course as I'm writing this and thinking about my day I can feel the tears trying to gather up. 

This morning I met with on oncologist near our new address.  I wasn't quite sure what I wanted to talk to her about.  I definitely wanted to get an idea of her treatment strategy.  I don't want my current treatment plan changed around too much.  It's working well and giving me a good quality of life - and she "got" that.  She's been in practice over 20 years and seemed interested in Al and I as people, not just as another case.  She offered one slight change to my treatment that I wasn't too surprised by.  After we left Al and I compared notes and were very happy with the conversation.  Originally I was planning on meeting with another oncology group, but I think I will stick with this doc for now.  I can always look around again if I'm not happy or need a second opinion.  The other thing that I liked is that she referred to some of her patients as her friends.  And one of them is an avid cyclist who lives near us.  The doc offered to introduce us and I thought it was a great idea.  I'll need some help scoping out good cycling routes.

 

And them more good news!  I just got a call from my realtor and I have my first showing scheduled for tomorrow morning!  I'm glad I won't be home.  I'm not looking forward to strangers stomping around my house and critiquing it.  Afterall, my house is perfect.  How can anyone say anything negative about it???;-)

Got home from the hospital at 6:00 pm on Friday.  I was looking forward to some sleep and rest.  It felt great to be in my own home and on my own schedule.  I've been dealing with some pain issues but they seem manageable.  Side effects from the pain drugs make me feel pretty loopy. But . . . loopiness is easier to deal with than pain.  I've taken the dogs out for a few short walks and that's been about all I could manage.  I'm trying to do some light housework and a little packing and that's about the limit of my endurance.  Bottom line: 

Tomorrow I go into the hospital for my 7th ERCP.  This is when they clean out and/or replace the stents in my bile ducts.  It will be my eighth hospital stay in 11 months.  What a difference a year makes.

 

And, on this day before the big day, I get a bonus!  While I am under tomorrow they are going to do a colonoscopy as well.  I had two bouts of c diff this summer and they want to make sure everything is healing.  So for bonus today I get to do the prep for the colonoscopy.  My diet today will consist of clear fluids only - I'm already hungry!!  Around 5:00 I start drinking the nasty fluid and spend the rest of the evening on the toilet.  Too much information??  Sorry.

 

Mary is taking me to the hospital tomorrow and I am grateful for her help.  But there is nobody I would rather have next to me as I awake from anesthesia than my husband.  He and I are able to communicate with a look, a squeeze of the hand or the all important hug.  We don't have to communicate with words.  He is working at his new job in OH and I will go out to visit later this month.  I try not to stress over his absence too much.  I'm thankful for my support network of friends and family.  But nobody can replace Al.

I read an article today about "conditional survival rates" for advanced cancers.  The main point of the article was that the longer you live - the longer you are likely to live.  Sounds good, right?  Then I come across expected survival rates for advanced breast cancer.  The table predicts, with 95% certainty, that somenone my age and race, who has already survived 5 years, will survive up to another 3 years.  Median survival is another 18 mos.  That sounds really short to me.  Wish there was some way to stop that damn ticking time bomb.

 

I've been stressing over the whole moving thing and this just put me over the edge.  I don't want to get sick!  I want my life to continue the same way - indefinitely!  Why in the world do I keep researching and reading this type of stuff????

Back up to Hershey for three appointmtents today:

1.  Pain Clinic

2. Oncologist to review bone scans

3. Infusion room for Herceptin

 

As I was driving up to the hospital it felt like my first appointment was a waste of time - and that's a good thing.  I was first referred to the Pain Clinic a year aga with searing hip pain from progressing bone lesions.  I haven't had much of any bone pain for several months.  Doc usually likes to see me every other month and we scheduled another appointment for September - BUT - she told me to reschedule if I continue to feel good, no need to come in to see her. 

 

The new cancer clinic at Hershey opened up yesterday.  The new facility is fantastic.  Lots of natural light and more open space.  They still have to work a lot of kinks out.  I really think the overschedule patients and it leads to a nasty backup with patient flow.  Met with my doc to review blood chemistry results and bone scan.  Blood levels almost look like that of a "normal" person!  And the bone scan summary had some wonderful vocabulary.  Summary of the report reads, "Metastatic disease is stable to slightly improved with no new metastatic foci."  This is the first time in over five years that they said my bones have improved!! That explains to lack of pain.  Onc was very pleased, as was I.

 

Infusion room was my last stop of the day.  Good news is that they didn't have any problem with IV - one try and it was in.  Bad news was that they were really behind.  About 3 hours behind.  The new waiting room has comfy chairs and I was able to pass the time talking with other very upbeat patients.  Every time I talk with people there were seem to instantly compare stories:  how long have you been coming?  what type of cancer do you have?  who is your doctor?  etc.  I feel like a veteran now when I share that I've been undergoing treatment for over 5 years.

Went up to Hershey again today.  This time I had a bone scan and a bone survey (basically a head to toe series of xrays).  Everything went smoothly and I was back home by 3.  The technicians have seen me MANY times and treat me like a celebrity.  Pretty nice when everyone - from the receptionist to the technicians knows me on sight and always asks about my biking exploits.

 

I'll have to go back to Hershey on Tuesday for three appointments:  Pain Clinic (fortunately we haven't had much to talk about), oncologist to review scan results and then on to infusion room for my Herceptin treatment.

The physicians assistant (to my GI doc) called today with lab results.  Turns out there is a different reason for my abdominal pain.  I tested positive for C Diff., a nasty bacterial infection.  It is resistant to many antibiotics but can be successfully treated by two antibiotics.  And my GI doc prescribed one of those yesterday.  He's so smart!  So hopefully I'll be feeling better soon and won't need the ERCP or colonoscopy.  Quite a relief to hear the news.  C Diff is no joke - but a course of antibiotics is a whole lot easier than the procedures we talked about yesterday.

 

Here's more information about the bug:  http://www.webmd.com/digestive-disorders/tc/clostridium-difficile-colitis-overview

I went to Hershey yesterday for my zometa infusion.  One of my nurses touched base with me and siad it was time for some quarterly tests - and she wanted them done before my appt with oncologist on Tuesday.  The big frustration on the day was how behind the infusion room was.  I was scheduled for 11:30 and they didn't call me back until after 3.  I was getting really annoyed and then the stomache pain kicked in with a vengeance.  I was trying to wait patiently but found myself  getting increasingly frustrated.  At times I was fighting back tears because of the pain.  I'm sure the pain alone would have been tolerable, but the extra wait was pushing me over the edge.  I'll bet everyone else in the waiting room thought I was crying over the Michael Jackson memorial service!

 

They finally took me back and had some difficulty with the IV - at least it was only two stabs.

 

I checked out and the secretary scheduled my tests - one for today and two for Friday.  That makes 3 drives to Hershey for the week.

 

This morning I left early for my 8:30 am appointment with GI department.  I met with the PA - she is fantastic.  She listened to my description of the problems and then I got lucky.  My GI doc - who spends most of his time doing procedures - was in the clinic this morning and she brought him in to our meeting.  He spent a good 30 minutes with me.  He is really a special doc - very technically skilled and his people skills are even better.  He thinks the upper abdominal issues might be caused by the bile duct stents.  He thought that one of the stents may have shifted slightly and is irritating my pancreas.  His best guess with the pain on my side might be an irritated colon.  I haven't been "regular" in quite some time and keep bouncing back between constipation and diahrrea.  His plan for treatment is to repeat ERCP and make sure the stents are in the right place.  While I'm under he'll also do a colonoscopy.  All of this will be done in the next 2 weeks.  I just hope the ERCP (scope down my throat) and the colonoscopy are completed with two different scopes!!  Or at least do the ERCP first ;-).

 

Next step with nuclear medicine for my MUGA (heart) scan.  This is done every quarter.  They place an IV - remove some blood and tag it with a radioactive substance and then reinject the treated blood.  Then they scan my heart to see how well it is expanding and contracting.  The IV part was tough - they ended up placing it inside my wrist - OUCH!  The test is easy - I just lay there for about 30 minutes.  The technician likes to kayak and we compared notes about how a hobby can get expensive.  It's always tempting to get new equipment and the latest and greatest stuff comes out.  In the middle of our conversation he says, "You must really be relaxed. Your resting heart rate is 40!"  And I said "thank you bicycle!"

 

Last step was a stop at the lab for blood work.  They were pretty busy so the wait was a little longer than normal.

 

I was supposed to meet some friends for a ride at noon but the day's appointments were not cooperating.  I called Joan to let her know that I wouldn't be there on time and that they should ride without me.  She said no, she would call everyone and see if they could ride a little later.  We ended up meeting at 2 for a nice easy ride.  I really appreciated the gesture.  It was great to hang out with friends.

Last Thursday was a much rougher day than I expected.  I had three appointments for the day:  CT scan, meet with oncologist to review results and then on to infusion room for Herceptin infusion.

 

Sharon joined me for the day and I was glad for the company and support.  I felt good both mentally and physically and was ready to take on the day.

 

First stop was the CT scan.  I have to get there an hour before the scheduled test so I can drink about a liter of contrast.  It went down pretty easy.  Sometimes it causes some stomache upset.  This time it triggered a fun filled day of diarrhea.  The abdominal cramping, sit on the toilet and feel like you're going to throw up kind of diarrhea.  So I was just starting this mess and they called me back to the testing area.  First step was the IV placement.  The technician tried twice and was unsuccessful.  She suggested I head to the main hospital and she called ahead to make sure an IV specialist would be available.  Before we could head out I had another nasty session in the restroom.  By now I wasn't feeling so great emotionally.  I started out strong and confident and started to slowly transform into an emotionally fragile state.  The IV attempts hurt - and I had more to look forward to.  My stomache hurt and I started feeling sorry for myself.

 

We checked in at the main hospital and my stomache was acting up big time.  On my way back from the restroom (the last of several trips) the IV specialist was waiting for me.  He took me back to his station and started setting up his equipment.  He put the band around my arm, took a quick look and then very efficiently placed the IV.  I was surprised how quickly and easily he got the job done.  I didn't have to wait much longer and then they called me for the scan.  Sometimes the contrast that goes through the IV can really hurt, thankfully this time it didn't.

 

Then on to meet with my oncologist.  The phlebotomist had to take some blood and used the IV that was still in my arm.  The blood was flowing very slowly and she jiggled the needle around to try to get a better flow.  By the time she was done the IV was sticking out a good 3/8".  I asked if she would be able to slide it back in and she said no.  She took it out and I was a disappointed because they still needed access for my infusion later in the day.  Good news is that the scan showed stable - meaning no progression.  There was a suspicious new area on my liver, but it wasn't clear if it was a new lesion.  It was good to hear that nothing new was going on, but it didn't help to explain the upper abdominal pain I've been feeling the last week or two.  My oncologist suggested I talk to my GI doc about it.

 

Finally we made our way to the last appointment in the infusion room.  By now I'm tired - more emotionally than anything else.  I'm thinking about how frustrating it is knowing that I get to go through more of this - more CT scans, more poking and prodding, more diarrhea, more sitting around and waiting, you get the idea.  The infusion nurses had a hard time getting the IV placed (does this sound familiar) but the rest of the treatment went smoothly.  Towards the end of the infusion my stomache started hurting again - the upper abdominal pain that I've been feeling lately.  I took two Percocet and asked Sharon if she was willing to drive us home.

 

We finally got home around 5:30 and as soon and I opened the door I could tell that the dogs were sick again.  It was the nasty smell of doggy diarrhea.  Thank goodness we crate them when we're not home.  At least the mess was contained.  Nothing like taking care of the mess when all I really wanted to do was lay down and take a nap.

 

While the CT scan results were good, it ended up being a pretty rough day.

 

 

The last few days were really rough.  Pain was intense and I didn't like the other extreme of being doped up either.  But . . . today I woke up feeling pretty good!  I joined some friends for a low key ride and felt like a new woman.  I wasn't super strong (I haven't ridden outside in 2 weeks) but felt surprisingly good.  It is always such an emotional boost when I ride.  I feel like anything is possible. 

 

Tomorrow I go up to Hershey for a CT scan, review results with oncologist and then head to the infusion room for Herceptin.  Sharon L. is going with me and I'm grateful for the company.  Al and I are going to get up early and head out for a ride, then Sharon and I leave for Hershey at 8:30 am.  I'm always a little anxious at scan time so I'm glad that I'll be meeting with my oncologist to review the results the same day.