Waiting

After several tests, X-Ray, EKG (before and after the heart rate change), it was decided that John should be kept for observation and referral to a cardiac specialist to make sure there was nothing going on with his heart.  So, with all systems now purring like a kitten, we waited.  Being in the ER is always exciting.  Someone across the way was diagnosed with Tuberculosis and they had to immediately whisk them off to isolation.  As I said, never a dull moment.

I got a text from our young friend, Leslie, asking about the procedure.  She was concerned when I told her what was going on and immediately came to the hospital.  Leslie is a physical therapist and has been a big help during all of this, offering suggestions and using her, "phone a friend" practice to get any information we might need to make things better for John.

On her way over, she stopped and picked up pimento cheese sandwiches for us from the Bread Lady and chili and a Frosty from Wendy's.  John's tank was running a little low as he hadn't had anything since dinner the night before. We gobbled the food right up and again, waited for a room.  It wasn't long before John was taken to the North Tower to his room....and as requested, room with a view.  And what a view it was.  We looked directly over the East Care helicopter landing site, and with 3 helicopters, there was always activity.

By now, all of John's vitals were good, but we got word that it would probably be Monday before the procedure could be done.  John was devastated.  He had things at work he needed to do and sitting around in a hospital, tethered to a heart monitor was not in the plan.  We were supposed to be home by now, another rock in the road.

During all of this, I was texting and on the phone with our girls.  The ER has terrible AT&T reception, but will allow a text to go through, so that became our means of communication until he was in his room.  No problem there....must be that big window we had!

Soon, Dr. White came by.  She is a dear friend of Leslie's and happened to be on call that weekend for John's oncologist.  After looking over the results from the tests, she called to see if John could be scheduled for Saturday morning.  After several telephone tags, she told us they would not do his procedure unless it was an emergency, or unless someone else had an emergency and they brought in staff.  If the staff came in, then John could have his done too.  So, he went into NPO after midnight Friday, sorry that someone might have to have the emergency procedure, but hoping if they did, he could be served.

I got to the hospital early that morning.  Dr. White didn't come till around 9 or so and checked again on status.  We talked about options and decided if there was no emergency by 12 lunchtime, John would eat and we would just plan on getting it done on Monday.  The morning ticked by slowly and soon it was 11:45.  Our window of opportunity was closing quickly and I had already started making plans for going out to get John something to eat if his hospital tray wasn't what he wanted.

While talking, in comes his nurse.  They had just called from downstairs, there was an emergency and they would be able to get John in before they left.  It was going to happen today!  The nurse was already getting his file together and since all the consent forms were signed Friday, all we had to do was get downstairs.  In a few minutes, the transport crew was knocking on the door and away we go!

Thankfully, this time, all went well and he was back in the room within an hour, feeling sore, but much better after removing the nearly 2 liters accumulated fluid and inserting the "spigot".  Now John was really hungry, but he had to wait about an hour before eating to make sure everything was okay.  The hospital tray had come and it was a beef on a bun.  Sort of tasted like ribs and was actually pretty good.  He ate part of it and then realized, maybe he should just hold off on eating too much and was soon asleep.  It was good to see him resting peacefully, even though I knew he would be sore from the insert.  At least, we were on the road to getting the fluid situation under control.  The doctor told us, that after the spigot is put in, for some reason, the fluid will usually stop accumulating in about 70% of patients.  Hopefully, we will be in that group, but if not, we will handle that too.

The NC State Wolfpack was playing football Saturday afternoon against Georgia Tech in Atlanta.  And they WON!!!  That only added to the good day we were already having.

Around 5:30, the dinner trays were brought and they offered an extra tray to me.  Of course, I could eat with my baby and that is exactly what we did.  He sat in the chair and we opened the bedside table to accommodate both trays and we had a lovely dinner of salad, BBQ chicken breast, rice, corn, and a brownie for dessert.  It was actually pretty good, but was especially good to sit across from my sweetheart and know he was getting better in our room with a view!

Sunday morning when Dr. White came by to check on John, we asked if he could go home.  Everything looked good, so she checked us out and off we went......just like the little piggy in the Geico commercial, crying "WEE WEE WEE....all the way home!

PCQ

Pleurx Tube

We were up at 5 a.m. Friday, so we could ready ourselves and be at the PCMH Outpatient Clinic by 6.  We arrived in plenty of time, no traffic and plenty of parking near the entrance.  When we arrived, we were checked in and quickly taken to the procedure room.

Since his diagnosis, he has had problems with fluid accumulation in his chest.  He has had that fluid from beneath his left lung removed twice.  A radiologist uses an ultrasound machine to locate the fluid.  Then, they poke a hole, insert a vacuum tube and remove the fluid.  Of course, this is a painful procedure that is done with local anesthetics.  After the fluid is removed, he usually feels much better, but it can take time for the lungs to completely re-inflate.  That is due to lung alveoli being compressed and beginning the process of growing together.  It is the body's way of trying to repair itself.

After the second round of fluid removal, he then became eligible for a Pleurx drain.  I will call it a 'spigot', because I will be able to turn it on and off.  But anyway, back to Friday morning and plans to put the spigot in place.  As I said, we arrived at 6 a.m. ready for the procedure.  John hadn't had anything to eat or drink since the night before, as directed.  By 9:30, we were still waiting!  I went out to the main desk and checked to see if maybe they had forgotten about us...I mean, they did tell us to be there at 6!  We did our part.

Around 10:00, they came to get John and wheeled him back to the operating room.  I went with him and stayed till the surgeon came to answer any questions we might have.  While waiting, we did get to chat with Dana.  Dana is a dear friend of Katherine, sweet daughter of our friends, Charlie and Joan.  We watched Dana grow up into a beautiful young lady and it was ever so nice to see her in a job that helps people.

John and I had talked to Dana and her husband at an ECU baseball game in the spring.  Seems her husband works at the same hospital, with the same doctor, that John's mother, Margaret, who was a nurse, worked with many, many, years ago.  John's mother died of breast cancer at the age of 58, in 1977, just before our oldest daughter, Meredith was born.  I was so swollen and pregnant the day of her funeral, I could barely get shoes on and remember riding to the service in the back seat of the car that hot summer day with my feet propped up hoping they would not get any bigger.

Our short visit with Dana was soon over and John was taken in for the procedure.  For this event, he would not be completely put to sleep, sort of in LaLa Land, like when you have a colonoscopy.  So, I knew he would be back to the room in about an hour.

I gave him a kiss, told him I loved him, and rubbed his "monkey hair" (what I call his hair now that it has thinned from the chemo).  Then back to the room to wait.  In about 10 minutes, the doctor came in.  I knew it was too soon for him to be back and I didn't like the look on her face.  She told me, "There was a serious problem, something had gone terribly wrong and John's heartbeat had surged to 180 beats per minute.   The procedure was put on hold and he had been whisked to the Emergency Room."

It took me a minute to process what she had just said.  I was sitting there waiting for John to come back....fixed and ready to go home!  All kinds of thoughts rushed through my mind.

She walked me over to ER and the well trained folks there were working on him and already administering a drug that would slow his heart beat.  And it did.  The rate dropped like a rock.  John of course was feeling fine during all of this but the monitors showed there was a problem.

To be continued....

PCQ

Emails and Notes

I receive so many kind emails and notes from friends and family.  They do truly warm my heart and help me weather the struggles in pulling my wagon.  Sometimes it seems the load is just too heavy, but something or someone comes along and the words of encouragement help me find the strength.  


This is an email that I received this week about my Sisyphus blog posted on September 1, 2010. ( I have the blog posted below.)  Several of you have used postings from my blog in Sunday School classes or Bible study, and that is really an honor.  Maybe my journey will help others.


PCQ


To My Dear Friend Pat,

Thanks for the update and we are so glad to hear that John responded
positively yesterday.  I trust that you are home now. 

Please know that you and John are inspiring others in so many ways.  

And, I must tell you that I shared your Sisyphus blog entry with my SS
class last week as we discussed how we deal with our own boulders. 


Thank you for the ways you are ministering to others. 




Sisyphus


Had a chemotherapy treatment on Tuesday and I'm tired. Physically tired. Mentally tired. Having cancer and all the accoutrements that go with it, just wear you out. It wears down your soul. I've lived with it for six years now, and especially for the last year, it has been difficult.  Thousands of miles driving to and from the doctor and hospital. Visit after visit, procedure after procedure.

Having cancer is a little like the Greek myth of Sisyphus. Remember Sisyphus? The guy who had to roll a huge boulder up a hill each day, only to almost get to the top and have it roll back down again. So he had to do it all over again the next day. I think Sisyphus at least got to rest at night. When you have cancer, you have to keep rolling that boulder. If you stop or give up, it will roll back down over you.

Sisyphus was a bad guy. He deserved that whole thing with the boulder. He probably should have gotten worse punishment. So I've been wondering, can I tell someone that I learned my lesson? That I'm sorry for whatever it is I did to cause the cancer?

Of course I can't. Cancer is not punishment. It's an indiscriminate killer. Cancer doesn't care who you are or what you've done. It doesn't care if you're a good person, or bad. Or like most of us, a little of both. It doesn't care if your life is in shambles, if you are rich or poor....or if you've totally gotten your act together. It comes when it wants to. Maybe that's why it seems so cruel.

I would imagine that while Sisyphus was rolling that boulder up the hill each day, he thought about all the bad things he'd done. At least you'd hope he did. I think that most cancer patients think about the bad things the cancer has done.

But maybe I've got this all backwards. Maybe it's the cancer that's Sisyphus. Every day I get up and it has to start all over again. I hadn't thought of that before. I sort of like the idea.

I hope the cancer is getting tired and frustrated of pushing on me. I hope it's thinking about all the bad things it's done. Cause I'm going to make it work really hard to get me.


PCQ

UNC Cancer Center

When I arrived at the hospital Tuesday morning around 7:45 to retrieve John, he was sitting there, bag packed, patting his foot ready to go.  In no time, we were waving goodbye to everyone and thanking them for such good care.  PCMH...in the rear view!  YES!

After leaving Pitt Memorial, John was hungry, really hungry.  Hospital food doesn't always fill the bill, so off we go to get breakfast.  Bacon, cheese omelet, toast, pancakes, coffee, all the necessary goodies for a fine breakfast, and it was perfect, and so good to see him looking well and eating.

While having breakfast, our friend Jim, called.  He had a friend, Betty, that worked at the UNC Cancer Center and she was going to help us. We exchanged numbers and headed home to Snow Hill to regroup, unfortunately, we were both pooped, and it was only 9 a.m.

We had rushed to make sure John was out of the hospital in time to make our appointment in Chapel Hill that day at 2 p.m.  Luckily, everything had fallen in place so far and having a connection like Betty there to help us through the hospital maze would be the "cherry on top".

After dropping his bags, checking on a few work issues by phone, taking a shower and re-ragging (changing clothes), John sat down to rest a few minutes.  I was bustling about, taking care of a few bills, getting information printed out for a meeting I had that night, and then the printer flashes an alert that it is OUT OF BLACK INK!  Don't have time for this.  About that same time, the driveway alarm dinged and the dogs started barking.  I looked out the door, it was Martin, our pastor.

We welcomed him in and he and John sat down to talk.  I excused myself to finish gathering the rest of our information for Chapel Hill.  Soon it was time to go and after a sweet prayer and gentle hug from Martin, we readied ourselves for the trip.

Going for a second opinion seems simple, but it is not.  The most difficult part is preparing yourself for what may be said.  Everything has to be rehashed, retold, reviewed by someone you don't know.  It's hard regurgitating dates and facts, especially when most of them, you want to and try to....forget.

When we looked around for an expert in lung cancer to offer a second opinion, several names were given, but one name came up several times, Dr. Mark Socinski, at the UNC Lineberger Cancer Center.  Mind you, we told everyone, travel was not a problem, we would find a way to get there.  But luckily, Dr. Socinsky, was close by.  Well, around a hundred miles, but Chapel Hill seems like our back yard because we are so familiar with it.  Our daughter, Lauren, received her undergraduate degree from UNC in 2002.  And as we drove through the beautiful university campus toward the Cancer Center, we passed many places that brought back wonderful memories.

We arrived about 45 minutes early, chose the Valet Parking option and called Betty.  Much to our surprise, she was out to meet us within ten seconds.  We introduced ourselves and she escorted us in.

The Lineberger Cancer Center is an impressive facility.  Not as impressive as the Mayo Clinic, but certainly nearing that level.  Our tax money at work!  Betty got us to our checkin point quickly and offered us a bowl of wonderful chicken vegetable soup with croutons which we accepted eagerly.

Shortly, we were face to face and talking with Dr. Mark Socinski, Associate Professor,  Clinical Research in Hematology and Oncology at the University of North Carolina Lineberger Cancer Center.  A well respected, well published, (and quite handsome) doctor that is a noted authority on lung cancer, especially the type John has.  After a lengthy discussion about John's situation, Dr. Socinski gave us his opinion of what would be the best treatment.  Since the first cocktail didn't work, John's oncologist, Dr. Lee, had laid out 3 new drugs.  These were sifted from many options.  Several options were taken off the table because, after genetic testing, they were shown to be ineffective for John.  Of the three remaining drugs, Dr. Socinski endorsed two of them and agreed with what had been done to this point.  He also offered his opinion for radiation and surgery and said, "If this next group of drugs does not work, please come back."  He told us John is now in the system and there are new drugs in the pipeline that may be available soon.  After listening to him and asking many questions, we thanked him, went by to tell Betty goodbye, and headed east.

Another long but productive day.  Wagon wheels are hot....but still rolling.

PCQ

PCMH

It's been another adventure.  John started feeling bad late last Friday and when I saw him sit down outside Saturday night to cook our steak on the grill, I knew it was really bad.

When he came in, I said, "Do you want to go to the hospital tonight, or wait till morning?"  The ER is never a fun place to be, but Saturday nights are usually more exciting and crowded.  But, in thinking through the process, I remembered, East Carolina didn't have a home football game,  they were playing at Virginia Tech, so that would certainly lower activity in the emergency area.

We had a wonderful dinner of steak, sweet potatoes, and salad, but it didn't appeal to John, he wasn't feeling well and only ate a few bites.  I cleaned the dishes and John immediately went and laid down on the couch.  In a few minutes, I joined him.  "What's the plan?" I said.

"We'll go in the morning if I am not better," he said.

It was a fitful night for him...and me.  He couldn't get comfortable and the coughing kept me awake. Sunday morning, he was not better and ready to get something done.  John called his doctor and was told to head to the ER, so as we arrived at the emergency room around 10 that morning and after an X-Ray, we soon had the answer, fluid had collected under his left lung and was causing compression.  It would have to be removed, but that wouldn't be done till Monday.  So off to a room for the wait.

We did have a few fun moments in the ER, the daughter of friends from Person County, was on duty and she entertained us with her antics.  So wonderful to see her grown up and a fine nurse.

Monday, John was wheeled out to ultrasound, where they located the best place to punch a hole in him and drain the annoying fluid.  While still awake and wanting to watch what was being done, they removed 1.7 liters of fluid.  He immediately felt better, but the doctor told him he would continue to breathe better as our lungs will start to grow together when fluid causes compression.  Uhmmmm...never thought about that.  So we wait for things to get back to normal.

The hospital stay was made much better with help from our friend, George, who works there, and, my red headed girlfriend Watusi.  She was kind enough to bring lunch and sit with me while John was having the fluid removed.

We are so thankful that it was something that could be repaired.  Now, our next challenge was to get checked out of the hospital first thing Tuesday morning so we can make our much anticipated appointment with Dr. Socinski in Chapel Hill.....the wagon keeps rollin'.

PCQ

#7 Chemo Treatment Today

My life is ticking off in two week chemotherapy increments.  At least every other week is easy to keep up with.

Today was the 7th chemo treatment on the new regime. Checked in at 9:15, checked out at 2:45.  I had six treatments with the previous cocktail that did not work as anticipated. Thankfully, today, my blood numbers were normal, blood pressure still up a bit, and I had lost 1 1/2 lbs.  We will have another scan after the 10th treatment.

I had lots of things I needed to talk with Dr. Mahajan about.  He makes it easy for me and I do so appreciate his knowledge, compassion, and quiet caring demeanor.

So here's an update on my collateral damage, starting at the top.  Repercussions from chemo for a lot of patients, are often worse than the disease.  But it is the wagon we must bravely pull.

My hair continues to thin out.  I know most people will not notice, and that is a good thing.

The chemo dries out my nose, eyes, mouth and throat.  It even changes my voice and I sometimes sound like I have a cold.  It gives me hiccups, too, and usually at the most inopportune times.  The drugs attack cells that divide quickly.  Unfortunately, that can be good cells along with the bad cancer cells, so it becomes a delicate balancing act.  For the dry nose, I have ointment that I put on a Q-tip and gently swab the inside.  So far that has helped.

For my mouth, lips, tongue, and throat which swell after treatment, and have tiny bumps and sometimes big bumps and sores, I use Magic Mouthwash.  It is a compound mixed up at the pharmacy just for me, not all Magic Mouthwash is the same.  So far, it has helped some, but sure not fun to use.  The swelling and irritation in my mouth affects my taste.  But, after the horrible reaction I had with the previous batch of drugs, this group seems like a cakewalk!

Oh yeah, and then there is the nausea.  That is very inconsistent, and just when I think I have dodged the bullet, it will jump out and go "BOO"!  I do have medication for that, just sometimes hard to keep it down when you are already having problems.

Moving on down to my chest, my port still gives me problems.  The port is in the left side of my chest and that is how the chemotherapy is administered.  The nurses plug me up using the port and the chemotherapy drugs are sent via the port to a main artery in my heart where they are quickly diluted.  And yes, it hurts to get hooked up, so I have cream that I apply several hours before to numb the area around the port.

Not all chemo patients have to have a port, some, like John, have their chemo administered through their arm, just depends on the regimen whether you will need a pump.  One of my meds must be administered over 46 hours.  After the other drugs are given, I am fitted with the travel pump and sent home. So, every 90 seconds, it squishes out a dose of the drug. In quiet of the night, the sound of the pump is easily heard, constantly reminding me it is there, and why.  It is about the size of a small purse, and I wear it around my waist.  It makes for fitful sleep on Tuesday and Wednesday night.  Plus, taking a bath is like doing the Hokey Pokey, cause the port site and pump can't get wet.  When I lie down in the bed at night, pump in or out, the tube that runs under my skin from the port entry, up over my collarbone and down to my heart, pops up and looks like something from an alien attack.  It initially scared me, thinking something was awry and I would have to have it removed and another put in.  But, it seems, all is okay, the tube just kinks up, causes a little pain, and gets my attention when my body is in certain positions.

Seems I also have "white coat" syndrome.  My blood pressure is always higher when I go to the doctor, but considering the life altering events I have encountered at the doctor's office, it is easy to understand.  Like the old Mark Twain saying, "The cat, having sat upon a hot stove lid, will not sit upon a hot stove lid again. But, he won't sit upon a cold stove lid, either."  I'm always expecting a hot stove lid, and my blood pressure reflects it.  And, one of the chemo drugs I take has the nasty side effect of raising blood pressure, so I monitor my pressure at home frequently, and most of the time, it is just slightly higher than my normal readings.

Well, I've made it almost half way down and will finish tomorrow.  Tuckered out from my chemo treatment today.  Unintended consequences. Collateral damage you know.

PCQ

Update on John

John and I have gotten several phone calls recently asking for an update on our health, so today I will get you caught up on John.

Sorry I have been so inconsistent with my posts, but John's hospital adventure drained me physically and emotionally.  It has taken time to get everything back in order after tossing it all in a (mental and physical) pile for later.  All things considered, I think we are doing pretty good.

Told John the other day, some people spend their money on golf or fishing, we spend ours on doctors' appointments and prescriptions.  And....thankful we are to have such good care.

John had a CT scan on Wednesday and will get the results from that next week.  His weekly blood check was good and as requested by all of you...we are getting a second opinion.  The name that surfaced from several people is actually in Chapel Hill at UNC.  We will let you know how that goes.

Radiation may be an option for John and he is being referred to the same doctor that helped me.  She will review his case and make a determination at that time.  Guess that will work well with the second opinion also.  So lots going on for him.  He is still weak but gaining strength everyday.  To have had major heart surgery just four weeks ago, and undergoing chemotherapy, I think he is doing fantastic!  But I didn't expect any less.  That's my John.

Wagon still rollin....

PCQ

Happy 90th Birthday Harold!

Harold's birthday is today.  He's a 1920 model, so today is a big birthday.  I'm thinking that he will get more birthday wishes than I would even imagine receiving, cause Harold's special.

He is a UNC graduate, though that was interrupted by WWII.  He loves to use that as a source of gentle irritation to John (and me), as we both went to NC State.

One of my favorite Harold stories occurred a few years ago when our daughter, Lauren, who also graduated from UNC, garnered a summer scholarship to travel in Europe.  She was ever so excited telling us about the places she would go and the things she would see.  Harold sat quietly and listened to her.  After a bit, he said, "Lauren, I had the same opportunity when I was your age."  Lauren looked at him quite surprised and said, "You got a free trip to Europe Harold?"  Without missing a beat, he said, "I certainly did, and they were kind enough to give me a backpack and a rifle, too."

John and I are lucky enough to have Harold as a dear friend.  When I look back, it is hard to tell when we realized we loved him so much.  It just happened, and anyone that knows Harold can understand.....cause he is special.

Happy Birthday Harold!

PCQ

Interesting Info from Save the TaTas Website

WEDNESDAY, SEPTEMBER 01, 2010

Thoughts on Michael Douglas and Cancer Treatment

Cancer is awful, obviously, but so is the treatment.

I really appreciate how Michael Douglas is being very open and honest about that. When I read this article today I felt for him.

http://news.blogs.cnn.com/2010/09/01/wednesdays-intriguing-people-23/?hpt=T2

Radiation burning the mouth, not able to take solids. As if getting cancer isn't enough, you must endure this kind of pain.

Two years ago I participated in a day at Universal Studios as a volunteer guide for kids who had or had recovered from different kinds of cancers, mainly blood cancers. One of the 10 year olds was bubbling around as a ten year old girl would, so happy. I naively said to her mom, "Wow, she's recovered really well!" Her mom retorted, "She has the bones of a 70 year old woman. She has osteoperosis." I crumbled inside. I think that was the first day I put a face with the physical cost of treatment.

We are currently supporting a researcher who is studying how to stop and reverse tumor growth, how tumors get into the bone, and her research is also helping gain scientific knowledge about osteoperosis and breaking new ground in terms of finding new treatments. I believe I was drawn to this particular scientist because of the sweet 10 year old girl at Universal. I got it that day. I realized how damaging, while life saving, our current treatment options can be. 

Sisyphus

Had a chemotherapy treatment on Tuesday and I'm tired. Physically tired. Mentally tired. Having cancer and all the accoutrements that go with it, just wear you out. It wears down your soul. I've lived with it for six years now, and especially for the last year, it has been difficult.  Thousands of miles driving to and from the doctor and hospital. Visit after visit, procedure after procedure.

Having cancer is a little like the Greek myth of Sisyphus. Remember Sisyphus? The guy who had to roll a huge boulder up a hill each day, only to almost get to the top and have it roll back down again. So he had to do it all over again the next day. I think Sisyphus at least got to rest at night. When you have cancer, you have to keep rolling that boulder. If you stop or give up, it will roll back down over you.

Sisyphus was a bad guy. He deserved that whole thing with the boulder. He probably should have gotten worse punishment. So I've been wondering, can I tell someone that I learned my lesson? That I'm sorry for whatever it is I did to cause the cancer?

Of course I can't. Cancer is not punishment. It's an indiscriminate killer. Cancer doesn't care who you are or what you've done. It doesn't care if you're a good person, or bad. Or like most of us, a little of both. It doesn't care if your life is in shambles, if you are rich or poor....or if you've totally gotten your act together. It comes when it wants to. Maybe that's why it seems so cruel.

I would imagine that while Sisyphus was rolling that boulder up the hill each day, he thought about all the bad things he'd done. At least you'd hope he did. I think that most cancer patients think about the bad things the cancer has done.

But maybe I've got this all backwards. Maybe it's the cancer that's Sisyphus. Every day I get up and it has to start all over again. I hadn't thought of that before. I sort of like the idea.

I hope the cancer is getting tired and frustrated of pushing on me. I hope it's thinking about all the bad things it's done. Cause I'm going to make it work really hard to get me.

PCQ