Thursday, July 28, 2011

Duke Clinics Make My Head Hurt

Today was a long morning and early afternoon at the Duke Clinics.  Before I get to specifics of what the assorted doctors had to say, please indulge me and allow me to complain.  And before you say anything, I am well aware that I am complaining a lot lately.  Believe me, Joe points out my complaining constantly. First, we arrived for his oncology appointment early....and by early I mean 7am for the 7:30am appointment.  Hoping against hope that they would call him in early for his blood work......they didn't.  At 7:30am, he was called for that.  First hope of the day dashed.  We did get back to see Leigh around 8:15am so we were very hopeful.  Sure enough, Leigh was back there on time (thank you Leigh) and we were out at 9am with only 1 floor to go up for Joe's 9:15am appointment with the surgeon, Dr. Lagoo.  We got there at 9:05am., again early.  Unfortunately we were still sitting in the waiting room at 10:15am.  Second hope dashed.  We were called back shortly thereafter and did not have to wait in the exam room for long before a doctor, not THE doctor, came in for questions and an exam, with a med student tagging along.  After this exam, they left, we waited 15 minutes, they came back for more questions and left again.  At 11:30am Dr. Lagoo arrived, spent time talking with us, asking questions, answering questions, and examined Joe.  We left there at 11:50am to go to Joe's 11am chemo appointment. Yes that's right, we are leaving 50 minutes after we were supposed to be there.  Needless to say, they don't hold your place in line if you are not there on time.  So at 12:15pm, 1 hr and 15 minutes from when we were supposed to have started, Joe is buzzed back into the infusion center.  As always they get right to work and by 1:15pm we were out of chemo.  We had a prescription from the surgeon to fill that required us to go the the basement via the yellow elevator to the "Brace Shop", yes ladies and gents they have a department called the Brace Shop.  After waiting 45 minutes in the waiting room, Joe went and asked how much longer we would have to wait.  The reply, not much longer, the person you will need to see is at lunch.  Joe asked for the prescription back and we left.  I took Joe home and finally got to the office at approximately 2:35pm.  Needless to say, not much of a work day for me. My plan was for about 12:30 at the latest.  Third hope dashed....I guess you could say 3 strikes and we were out.

Ok, now for the details.  The oncologist was pleased with Joe's blood work as usual but did inform us that his potassium was low, so now he has another set of pills to take.  We no longer have a medicine cabinet, we just moved all the meds to one of the kitchen cabinets.  They can hold a lot more.  The appointment with Dr. Lagoo, the surgeon, went very well.  Along with the resident they took more than 45 minutes with us, discussing Joe's hernia, what surgery would mean, how it would effect his chemo schedule, quality of life issues and generally asking and answering every question we had and what we had hoped for the previous week but didn't get from Dr. "He whose name shall not be spoken".  However, Dr. Lagoo does agree with said un-named doctor that surgery right now is not the best option.  There is no guarantee that the surgery could be done laporascopically and if not, Joe would be looking at 6-8 weeks without being able to have chemo treatments, which is not optimal.  She did suggest that he get a binder (think girdle not 3-ring) to wear around his mid-section to add support as well as keep the hernia from coming out so far.  Besides the extra support it will also cosmetically help disguise or hide the hernia.  The down side, it's hard to keep his pants from sliding down with the binder on, so LOOK OUT FOLKS!   You might be seeing more of Joe than you would want to. Joe also got a prescription for something to help him sleep on chemo nights which have proven difficult for him because of the steroids they give him during his chemo infusion.

The plan as it stands now is for Joe to finish this cycle of chemo, 1 more week. Have his week off and then do his next 3 week cycle and then get a new CT scan to see how the tumor is doing.  Hopefully it will show more shrinkage like the last scan, but at the very least it will give us an idea of how the tumor is behaving should there come a time when he does have to have the hernia surgery.  So for now, we continue on our merry way with the same course of treatment without interruption.  Dr. Lagoo was glad to have gotten the opportunity to see Joe and go over the case with him so that if at some future date the surgery does become necessary, she will know his entire history and be prepared.

As for Duke Clinics making my head hurt.....one granola bar and a cup of coffee is not enough for me to live off of for 10 hours.  Combine that with waiting, sitting (makes other areas hurt) and lots of white coats and your head would hurt too!

Thanks as always to everyone's prayers, thoughts and concerns.  We love all of you for it.

P.S.  Joe just piped in that I should add that even with the long days and my head hurting we are very grateful for the care that everyone at Duke has given him.

Sunday, July 24, 2011

Officially A Methodist

As of today, I am officially a Methodist.  My dad would be so proud.  Mom on the other hand...well, we won't go there.


Thank you to the entire Sullivan family, Cleta, Ivey, Elizabeth, Debra, Joe & everyone at Pleasant Grove United Methodist Church for your support today.  It means so much to me.

Thursday, July 21, 2011

A MUCH Better Day at Duke Today

Today was a much better day at Duke, at least for me.  Joe never seems to be bothered by anything.  For those of you that read the Monday post you know I was not a "happy camper" after his doctors appointment.  But I have calmed down now and today's oncology appointment went a long way towards helping.  Joe had a later appointment this morning, 10a.m., with his chemo infusion at 1:15pm.  Joe said he was a big boy now and could do it alone, but I insisted on being at the doctors appointment but I did let him do the chemo thing alone.  I've missed a lot of work lately and we are trying to keep it at a minimum.  Therefore, I only went to the doctors appointment.  I got to the Duke Clinic about 10:15am since Joe has to have his blood drawn prior to seeing the doctor so it is usually a 45min to an hour wait after that.  Joe was already checked in and sitting in the waiting area when I arrived.  We were called back to the exam room around 11:15am and only had to wait a little while before the nurse and then Leigh Howard came in.  Joe and I both talked with her for quite some time about last week's appointment with Dr. Tyler and then this past Monday's appointment with Dr. Perez and the confusion we felt after the latter appointment. I have heard from Dr. Tyler that he would make some calls about possibly getting another opinion on the hernia, so I already felt better about that aspect. We talked with Leigh in depth about the pros and cons of Joe having the hernia surgery, delaying his chemo treatments, possible complications and so on and so forth. The real decision is since Joe is not having any real problems with the hernia, should he just wait for a possible complication to occur or have a surgery to hopefully keep possible complications from ever happening. Sort of a preemptive strike. But like with all surgeries, there are risks and should they not be able to do the surgery laparoscopically, then that would mean a longer recuperative period and a longer period without his chemo treatments.  Leigh has a way of making it all easier to understand and never rushes us and always says that everything is our decision and she will be supportive of any and all decisions we make. In case you can't tell, we like her!  Her greatest concern is of course any delay or break in the cycle of chemo treatments, which could give the tumor a greater chance of growing and/or spreading. We will just have to weigh the pros & cons and make a decision.  But we don't have to do that right now.

So after a half hour of talking with Leigh and her examining Joe, I was off to work and Joe was off to the infusion clinic for his ritual cookies and hot chocolate (yes, ladies and gentlemen, even in 100+ degree weather, Joe has to have his hot chocolate at the chemo infusion center)

Joe made the best of his day afterwards by going to King's Sandwich Shop (if you've never been there, we both HIGHLY recommend) where he had 2 hotdogs, loaded with toppings and fries.  So all in all it was a good day, we both feel pretty good and we are off to our favorite Thursday night dinner destination in just a few minutes.  Hopefully Joe will be able to sleep tonight.  He has a history of having trouble sleeping on his chemo days so we have our fingers crossed that that streak will end tonight.
(Joe reading the blog to make sure I was accurate)
Thank you for all the prayers, well wishes and continued support from all our family and friends.  So many people are pulling for Joe!

Monday, July 18, 2011

Trip to Duke to See the New Surgeon

We made it to Duke with a couple of minutes to spare thanks to my excellent driving skills and ability to find parking spaces in the parking deck. We were not in the waiting room but 5 minutes before Joe was called back for vitals and then just a few more minutes before his name was called again to go back to an exam room. Sitting in here at 2:15pm. Care to wager how long before Dr. Perez arrives?  The answer was: 15 minutes.  Although he might as well not have ever come in as far as I am concerned.  (This is where my opinion and Joe's opinion differ widely).  The summary of what this doctor had to say was: since you are not doubling over in pain or are not continuously vomiting he would prefer to wait.  That message seems to me to be in direct opposition to what Dr. Tyler said last week.  We basically spent a lot of money to have the doctor examine him for 7 minutes and give him his business card and say, "call me" when your symptoms get severe.

Joe is taking it lying down (literally - he is laying on the sofa), I on the other hand have already sent a message to Dr. Tyler expressing my displeasure and asking for some explanation or clarification.  I'm extremely unhappy with today and so it is very quiet in the Lupton Holland household right now.

Saturday, July 16, 2011

Saturdays Just Aren't What They Used to Be!

I remember when I was young and Saturdays meant sleeping late, watching tv and/or playing outside with friends. Whatever happened to those days. I suppose it was the whole "growing up and becoming an adult" thing. But I'm here to tell you, Saturdays were a lot more fun back then. Yes, today I did get to sleep late (compared to the time I get up Sunday - Friday) but soon thereafter it was a trip to Lowes and then back home to mow the lawn. I know it was in no way as warm this afternoon as it was earlier this week, but I was sweating up a storm. The worst part, a sunburned head, the curse of a bald head. However, the yard looks much nicer. The biggest surprise for the day is that after 8 months of procrastination, Joe planted flowers in the pots outside. He did an amazing job. Now he just has to remember to water them consistently. Only time will tell as far as that goes but for now everything looks quite pretty, except for my red head!
(there are 6 pots of flowers like above, he didn't do just the one)

Joe has his appointment with the surgeon on Monday At Duke and then his oncologist and Chemo appointments on Thursday. Of course depending on what the surgeon says the Chemo might be changed. It just depends on how soon he wants to do the surgery.

Right now, I feel like a nap!

Monday, July 11, 2011

11:30 am is the New 9:30 am

Apparently they were having a "buy one get one free" day at Duke's Morris Cancer clinic 1A.  At least that is what it looked like by the mass of bodies crammed into every nook & cranny.  I haven't seen so many people in one room since the opening day at Nordstrom Rack.

The appointment today was a follow up with the surgeon, Dr. Tyler, that did Joe's surgery back in February and the appointment wasn't until 9:30am.  When we arrived and checked in, Joe got a seat inside but I had to go sit in the hall.  After about 5 minutes, Joe texted me that the seat next to him was now empty and to run in ASAP, so I did.  And there we sat, until 10:30am when they called him back for vitals.  However, we were foolish enough to think that surely we would not be sent back to the lobby and would go from vitals to an exam room.  Oh how wrong can 2 people be!  So back to the lobby we went, however, now our old seats were gone, the seats in the hall were filled so we had to go all the way down past the elevators before finding two to sit in.  But someone must have been looking after us because within 5 minutes, Joe's buzzer went off and we made the trek down the hall, around the corner, past the elevator, back to clinic 1A and carefully criss-crossed through the maze of humans to the waiting nurse.  So at approximately 10:45am, we were in an exam room.  Now we are on a roll, right????.....wrong.....the 3rd year medical student came in at 11:25am....yep, 1 hr 55 mins since our scheduled appointment time and the first person to come in for an examination is a 3rd year med student...not even a resident.  However, he didn't stay very long and left the room to go get Dr. Tyler.  That took until 12:05pm....that's 2 hrs 35 mins from the appointment time before seeing the doctor.  But enough complaining.

We had informed the med student of Joe's hernia and when Dr. Tyler came in that was his first inquiry. Joe was then on the table making the hernia pop out (it does it really obviously when he is laying down and lifts his head like he is going to do a sit-up....which I assure everyone he was not doing a sit-up then and will not ever be doing).   Dr. Tyler is of the opinion that he would like to go ahead and get the hernia taken care of as soon as possible before there are any complications.  Of course, the oncologist had said they preferred to continue with the chemo regiment and hope there would not be any complications with the hernia.  But, Dr. Tyler says if they can go ahead and get it taken care of now, there should be minimal disruption of his chemo treatments.  The procedure would be done laparoscopically and Joe should only be in the hospital a couple of days.  Many people have this done as an outpatient procedure, but with Joe's other health issues, a couple of days in the hospital would be a much better route to go.

So, next Monday afternoon we have an appointment with the surgeon on Dr. Tyler's team that would perform the surgery, Dr. Perez.  Hopefully his schedule will be flexible enough to accommodate the schedule preferred by our oncologists, Dr. Zafar and/or Leigh Howard.  Getting them on the same page might be the tricky part. Joe feels pretty good about going ahead and getting it taken care of.  We both have been a tad bit nervous about the possibility of the hernia causing complications with his intestines.  So going ahead and doing something to prevent that from happening seems better than just hoping it doesn't.  If there were to be an obstruction caused by the hernia, then it would be a much bigger surgery.  Although neither of us are thrilled with yet another surgery, better safe than sorry has never seemed more apropos.

We are so grateful for the continued prayers and concern expressed by so many people.  Thank you so very much.

Friday, July 8, 2011

First Week of July Update

We returned from the beach last weekend and enjoyed our 4th of July Holiday. We didn't do too much except watch the mini-series "John Adams". We've come to believe the best way to celebrate a holiday is to sleep late, relax throughhout the day and go to bed early. That is our (actually mine) idea of a perfect day. Joe had a doctors appointment and Chemo treatment on Tuesday morning. He had a good report from the doctor (although he managed to loose 4 lbs on vacation) and although the Chemo infusion took longer than usual, he got through it fine and has had a very good week. His family visited on Thursday and today he had several piano lessons.

Next Monday morning he has his first follow up appointment with his surgeon. This would normally have been when he would have had a CT scan to learn the status of the tumor but since he had one 3 weeks ago, it is doubtful they will order up another one so soon. This also will be the first time Dr. Tyler will be seeing Joe's hernia. I am anxious to hear what he has to say about that. Until then we plan to have a great weekend. Tomorrow, my plan is to treat Saturday as a holiday ***See paragraph above with regard to my idea of a good holiday***.
Joe keeps mentioning going to a movie or movies which is not part of my plan so we shall have to wait and see who gets their way.

As always, thanks go out to everyone for their prayers and good wishes. We are grateful to each and every one of you.

Vaccination date set

 This morning at 8 a.m. we began the process of trying to get an appointment date.  I had 3 appointments at the Duke Cancer Center so I was ...