MERRY CHRISTMAS

Merry Christmas!  I hope your holidays have been wonderful, and New Year's is yet to come. We spent Christmas day with Molly and her family, and Dave's sister Sandy joined us for dinner.  Tomorrow we'll head for the Atlanta area where we will see my brother Steve, Dave's son Dale and their families, and we'll stay with my sister Libbie.  Mom is already there with her.  We have many friends and cousins in the Atlanta area, and we are hereby making a resolution to get there more often, specifically to spend time with them.  On this trip we have family holiday visits and a wedding reception to attend, and will have to be home on the 30th so Dave can get his blood tested on the 31st.

He had blood work done today, and his counts went up a tiny bit.  I guess Dr. S. knows what he's doing (ya think?).  My current theory is that it's better to have a steady (3 times a week) injection of his medicine than to have a once a week injection.  Maybe the spikes in medicine was causing the ups and downs of his counts.  He will continue on the 3 injections/week schedule, still at the 50% dosage, get his blood tested again on Tuesday, and hopefully it will continue to improve.

Dave had some severe abdominal pain today, but it seems to have resolved.  We called our local family doctor (that would be the inimitable Dr. Chad) who talked us down from an almost panic state.  All's well that ends well.

For those of you who want details, Dave's WBC went from 2.6 to 2.8, and the GRA from 0.8 to 1.5.  We are happy with the improvement, though Dave is trying to reach 4.1 and 2.0, respectively.

I'll be posting again after Dave gets his counts on 12/31/13.  Then it's on to a New Year! Hooray.

WHAT GOES UP MUST COME DOWN - REALLY?

Our elation at Dave's counts going up two tests in a row came to a screeching halt today.  He has dropped down to the same point where, two weeks ago, he was told to wait a week before giving himself another shot.  This time Dr. S. is pursuing a different strategy; Dave will continue the next 3 shots - today, Monday and Wednesday at half dosage, then get his blood tested again on Thursday, 12/26/13.  The question is will he stabilize at this level?  The level is lower than we want it (WBC = 2.6 and GRA = 0.8) but if he can continue treatment without going down more, that will be a good sign.

I wasn't at the doctor's office for the discussion, and being a non-medical person, it doesn't make sense to me.  It seems we can fully expect the numbers to drop with more treatments … but, we'll see.  I do understand it's worth trying to see what will happen, since it's only for one week.  Also, Dr. S. is a very smart guy.

Dave finished his twice-daily shots of heparin this week.  Now his bruised tummy will get a bit of a break.  The doctor believes the blood clot in his arm has dissipated.

Today is Dave's birthday!  We had the pleasure of brunch with Mom yesterday; she drove down from Charleston for beignets and an omelette at Huey's and to wish Dave a happy day.  This evening we're going out to dinner with Molly, Chad, Chase and Coleman.  Dave is going to take a walk, then a nap, and he'll be ready for a steak at Ruth's Chris.

Happy Birthday, Dave!

COUNTS UP AGAIN

Things are going in the right direction!  Dave had his blood tested again yesterday (Wed.) and because his WBC and GRA were both up 0.1, he was told to have another 50% dosage shot last night.  He made it through the night without the chills then fever he gets at the full dosage. He will have his blood tested again tomorrow to determine treatment for the next week.  With the holidays approaching, and our travel at the end of next week, we all want to be sure Dave is stable.  Medically, that is.  :-)

COUNTS ARE UP A LITTLE

For the occasional reader, this obsession with blood counts may be tiresome, but for us, it is a major factor in how Dave's treatment is managed.  First, the results, then the conclusions -

Dave's white blood cell count went up from 2.2 to 3.1.  The expected range is 4.1 to 10.9.  The GRA which helps prevent infections, went up from 0.8 to 1.1, with the expected range being 2.0 to 7.8.  Both numbers, the WBC and GRA, showed improvement, but both are still lower than what the doctor would like to see.

Also, this improvement came after one shot in the week, and that one shot was at 50% dosage.  He is supposed to be have three shots per week at 100% dosage.  What we are all wondering is if his body is "saturated" and just cannot absorb any more of the interferon without it causing the problems with his blood.

We're going to try again today.  Dave has taken a half dosage shot, and will go back for more blood work on Wednesday.  If he's stable, he'll have another shot Wednesday.  If not, we have to consider whether to keep up the treatment.  What we don't know is if anything less than the standard treatment is effective.  If Dave cannot tolerate the standard treatment, does it make medical sense to continue at less than the recommended dosages?

In the meantime, we had quite an eventful week.  Dave's sister Candace was here from Tuesday to Friday, and we had fun catching up with her.  We enjoyed cocktails at a neighbor's home.  We joined a group of 50 Landings folks for a party and trip to St. John's Cathedral downtown to hear the Savannah Philharmonic's Holiday Concert.  We took Chase and Coleman to breakfast one morning, and made it to church on Sunday.  Dave has been taking 2+ hour naps in order to be able to join in the fun, though of course he still feels weak and tires easily.  It's the most wonderful time of the year!

COUNTS ARE DOWN AGAIN

We had quite a surprise at Dave's Monday check up.  His counts were down again.  Last Monday his white blood cell (WBC) count was 2.2 and his granulocytes (GRA) were 0.8.  He was told to skip his Monday shot, and he was retested on Tuesday.  On Tuesday, his WBC was 2.3 and his GRA was 0.9. Those numbers were going in the right direction overnight.  He was to skip his Wednesday shot and reduce his dose on Friday by 25%.  Monday's results: WBC = 2.2 and GRA = 0.8.  So even with a week off of his shots, and a reduced dosage on Friday, the results were just as bad as they were before he was skipping shots and reducing the dosage.

This time he was told to skip the Monday and Wednesday shots (again) and reduce the Friday shot by another 25% (for a 50% reduction from the original dose).  We shall see how that works for him.

In the meantime … we did get the tree in the house and in the tree stand.  This year, I did the lights while Dave watched.  Notice, I did not say he 'supervised.'  It was the first time in 25 years I put the lights on the tree.  The next day I did the ornaments and the rest of the house decorating.  It's beginning to look a lot like Christmas!!

Dave, as usual, is not feeling sick, but he is very tired and weak.  We've decided he needs to take serious naps in the afternoon.  He has been lying down, but has the television on and therefore does not get good sleep.  Yesterday we had a party to attend in the evening, so he did lie down in our quiet dark bedroom and he slept soundly.  That was better.  This afternoon, I was guilty of getting him out to approve of some Christmas gifts I was contemplating.  No nap.  Oh well, we'll do better tomorrow.

Dave's sister Candace has arrived and is visiting with her twin Sandy.  We haven't yet seen her, but she'll be here later this evening and she'll be staying with us until Saturday.  We love to have our family visit!

Dave contemplating my decorating.  Hmmmmmm

BLOOD WORK 2 DAYS IN A ROW

It was back to the doctor again today for more blood work to see if the downward spiral had stopped.  Dave's white blood cell count was up a fraction, as were the neutrophils.  They are still too low, but the slight upward tick was good.  Dave is to skip his Wednesday Intron injection (and skipped last night's) and he will begin again Friday with a lower dose (15 units instead of 20).  He will have his blood checked again on Monday.

The visit took almost 2 hours from start to finish, and most of the time was spent waiting, but we did see Dr. S and not just the nurse practitioner.  Dr. S. is always very thorough and wanted to know how Dave was feeling, he didn't want to make adjustments just on the blood work numbers.  Dave does not like feeling so weak, and that added to the decision to skip tomorrow's injection.  We'll have to see how a regular routine of a lower dosage works for him.

After leaving the hospital, we stopped to get a tree!  Fortunately, the young man working the tree tent put it on the Jeep and tied it on for us.  On the way home we stopped at Chicken and Waffles for fortification.  When we got home, Dave was able to get the tree off the Jeep and into a bucket of water in the back yard, but then had to go lie down.  This rubbery-muscle feeling is not fun!

Dr. S. feels Dave's arm is progressing well, and by that I mean he thinks the blood clot is dissolving.  Dave has less than 2 weeks left getting the 2 shots per day of heparin, and hopefully will not have to continue any more blood thinner.  He nicked himself shaving the other day, and had to wait forever for a clot to form.  Dr. S. suggested he use an electric razor, but Dave is not interested in that change.  I'm just glad he didn't participate in No Shave November.

Dave, two years ago, summiting Mt. Katahdin, and with a full beard.

THANKSGIVING AND BEYOND

It's been 12 days since I last posted and Thanksgiving has come and gone.  It was a big week, as Dave saw Dr. S. on Monday, Dale married Gina in Jamaica on Tuesday, we had Thanksgiving dinner with Molly, Chad, Chase and Coleman in Savannah, then on Friday we went to Molly's beach house on the Isle of Palms with Molly and the boys.  Chad had to work so stayed in Savannah.  Friday evening, Mom, Libbie, Jon and David came out to the beach and we were able to have dinner together.  Saturday, Jon and David left to go home to Houston, and Libbie left for her home in Hoschton.  We stayed until Sunday.

Coleman and Dave

Dave and David - Cheers!

Dave has been injecting himself with heparin twice a day, and his Intron every Monday, Wednesday and Friday.  The good news is that he seems to have overcome the chills and fever he was getting after the first few shots.  His routine is to take his shot at 8 pm, turn on his heating pad, and get into bed not long afterward.  He's been sleeping about 10 hours a night.

The not-so-good news is that his white blood cell count is down again.  It was on its way down when Dave saw Dr. S. last Monday, and it was down farther today.  We saw Rosemary this morning and she told Dave to skip his Intron shot this evening and come back for more blood work tomorrow.  We were hoping Dave's WBC wouldn't dive so quickly.  Now Dr. S. has to decide whether to reduce the amount of Intron Dave is taking, or stop it.

Dave is actually feeling pretty well.  He generally has overall muscle aches the day after his Intron shot, and he is very weak and fatigued, but he does not feel sick.  Not a lot of food appeals to him and he has dropped a few more pounds (he is down 12).  The only thing that seems consistently good to him is the homemade peanut butter a dear friend makes for him.   He has no taste for his beloved Scotch or even red wine, but a glass of white wine will do.  So unusual for him!

I was hoping to get our Christmas tree today, but with Dave's appointment with the nurse practitioner, then having to pick up and deliver meds and contacts to Sandy, it was all he could handle.  We had taken two cars, so I scooted off to get a couple of fresh garlands and a table wreath for my advent candles.  Maybe tomorrow?  Dave will have had 4 days 'off' from the Intron and I'm hoping he will start feeling better and of course that his WBC count improves.

LET THE SHOTS BEGIN

Dave, a man who until recently took no medications at all, not even a multivitamin, now has to have a spreadsheet of all his meds so he won't forget to take them on the right days at the right times.  (This demonstrates a difference in how the two of us go about things.  I suggested he get 7 baggies, label them Sunday through Saturday and put all the meds and shots he needs for a day in each baggy, as sometimes he has 3 shots a day and 4 different medications.  Not his style.  He set up a spreadsheet so he can check things off as he pulls meds, vials, hypodermic needles, alcohol pads, etc. from the myriad of boxes in the bathroom.)  Dave is, and always will be, an engineer.  I don't know what you would call me.  A jackass of all trades, maybe.

We met with Rosemary on Monday, who  told us Dave's liver and blood numbers were great. Then we saw one of the chemo nurses, who was going to teach us how to do the injections for Intron.  She started with a demonstration on how to open the sterile hypodermic needle. We almost fell over when we saw how big the needle was.  Thankfully, it is used only to draw the right amount of Intron out of the little vial.  Then Dave replaces that needle with another smaller (!) sterile needle to inject himself in his stomach.  He will be getting 20 units of Intron three times a week for 48 weeks.  He is also getting heparin shots in the morning and evening every day, so as I noted earlier, he is injecting himself 3 times a day on Mon-Wed-Fri.  The heparin shots should end in a month.

Sandy and I had opthamologist appointments in the afternoon, so we picked her up and the three of us went to lunch then to the eye doc.  At the end of the visit, Dave was beginning to feel the effects of the Intron.  He took Sandy back to her cottage and came straight home.  He felt chills, as he always did when getting the interferon intravenously, and by the evening he had a fever.  He was feeling lousy in general, until the fever broke about midnight.

His plan is to take the Intron shots in the evenings from now on and hopefully the first 12 hours of not feeling well will be mostly gone by the next day.

Dave has another appointment Monday.  If his numbers stay in the good range for the next 3 weeks, he will be able to switch from weekly to monthly appointments.

Now for a few pictures  - if you want to see them.  I put them at the bottom of this post so you don't have to look.  :-)

The heparin hypodermic

The injection

Disposal in the sharps box

Feeling no pain

BLOOD CLOT

In the last two days, Dave has commented his arm was sore, and the tender region was right around where his picc line was.  With today being Friday, and even though we are going to Dr. S's office on Monday, he decided to go to the office, hoping to be seen.  His tactic worked, and it's a good thing, as they sent him for an ultrasound, and discovered he has a blood clot.

Dave was given a week's worth of heparin shots, which he will inject daily into his stomach.  It may take up to 30 days of shots to dissolve the clot.  Can you believe those shots are $100 each?  Dad had to take them, and I'm familiar with their effectiveness. We shall soon see how comprehensive Dave's supplemental plan is for prescription drugs - ha. The good news is, Dr. S. had these meds on hand because another patient gave them back (his/her clot must have dissolved), so these were gratis.  Thank you!

Other than that little wrinkle, Dave has been doing well.  He took a 5 mile walk on Tuesday. He went out to dinner with a group of guys on Thursday.  He's still napping in the afternoons, and sleeping about 9 hours a night.  He has really enjoyed his two weeks of no treatments!

CHECK UP

We didn't see Dr. S. today after all, but we did see Rosemary, his NP.  Dave had his vitals checked and they discussed when to start his self-injections.

Dave's weight was up 7 pounds from last Wednesday.  I have a sneaking suspicion his last weigh-in was in error.  I didn't think he had lost 8 pounds in 10 days, though that's what was reported, and I don't think he gained back 7 in 6 days.  Either Dave was severely dehydrated at his last visit, or there was a little blip on the scale.  Whatever -- he is down 10 pounds from where he started and I am certain he had added back a couple of pounds this week.  His appetite is returning.

All his blood counts are back in the normal range and in fact his white blood cell (WBC) count is exactly where it was before his first treatment (4500)!  That's a good thing, as Dave is tired of being a hermit, and we went out to dinner Saturday night (Coleman's birthday) and to church on Sunday.  He stopped on the way home today to get a haircut.  When his WBC count was so low, he not only had to avoid people, he certainly didn't want to get a scrape or cut and end up with an infection, so he felt he was overdue for a haircut.

Dave 11-11-13

Dave is not looking forward to the coming 11 months of injections, not that he minds injections, but he does not want to feel as weak and fatigued as what he experienced last month.  He could have started them today, but he and Rosemary decided they would wait one more week so he could recover a bit more strength.  Rosemary seemed to think that with the 18 or 20 unit dosage Dave will be getting, he may not have to inject 3 times a week, it may be less. She is going check with Dr. S. and we'll know for sure next Monday when he starts.

I'm assuming there may not be much to report in the next week as Dave plans to take it easy but also start exercising a little, maybe even going to the pool.  I will update next Monday after we get his injection schedule.  We will also know the results of how his liver is doing.

MUCH IMPROVEMENT

Saturday, Nov. 2nd, was not a good day.  Dave was as listless and weak as I've seen him. He felt terrible and could (or would) hardly talk.  He slept most of the day.  We were both so glad the high dosage part of this year-long treatment plan was over!

A turning point came between Tuesday and Wednesday, when we went back to the hospital for more blood work.  Dave was up in the morning, making his breakfast, saying a few cheerful things!  He looked better, he acted better and as we then suspected, his lab report was better.

In an average healthy adult, the total number of white blood cells (WBC) ranges from 4,000 to 11,000 per cubic millimeter - a pretty wide range.  Last Friday, Dave's WBC was 1,600.  On Wednesday it was 3,500.  Almost on the low side of normal!  I'll have to ask what his normal count was before he started treatment.

Dave has now lost 17 pounds.  That's an additional 8 pounds in 10 days.  Rosemary, the NP, was concerned about his weight loss, in terms of him getting enough nutrients.  Dave is not unhappy with the loss.  He is eating healthy meals, just small ones, no alcohol, and no snacking.  She suggested he try to eat some snacks such as nuts, apples with peanut butter, granola bars and even Boosts.  Dave has started with nuts, and I'm sorry to say, some ice cream.  That's my fault.  I bought some Pumpkin Pecan Spice ice cream and darn it is good.

His rash has almost completely cleared up.  He still has some "crackle" as Rosemary says, in his lungs and she gave him exercises to try to get rid of it.  We don't want no stinkin' pneumonia.

Dave has been wearing a fleece jacket in the house for weeks, even though the house temperature has been above 72º and it is usually higher.  He has an extra blanket on his side of the bed.  He's always cold which is so unusual.  Today he graduated to just a fleece vest instead of the jacket.  The weight loss probably contributed to his chilliness.

Dave took a walk yesterday - without me suggesting it - but not today.  I just asked him and he said he'd go with me in a little while.  He's not anywhere near his old self, but there is definitely a change for the better.

We see Dr. S. on Monday and we'll be deciding when Dave will start the injections.  He is not looking forward to it.  I'm hoping this physical improvement will continue and he'll be a little more ready to start Phase II.

CHEMO DAY 20 OF 20!

It's caboose day - the end of the infusion train!  The nurses cheered when Dave walked in the chemo room; either they are glad to see him go or they are happy for him.  I believe it's the latter.

Dave's white blood cell count was lower today, near the 'danger zone' so Dr. S. recommended Dave get a half dosage of INF.  If Dave wanted to forego the last treatment all together, he could have, but the two of them decided to get in the last possible amount of INF while still being smart about it.

Now to back up a little, Dave seemed to have a mild allergic reaction to some spicy food he ate Wednesday evening.  His skin got slightly mottled and red, and this was in addition to the rash he's had.  The rash cleared up some, but has not gone away, in fact he is still getting some new breakouts.  We're not positive his new reaction was due to spicy food, but it is not an uncommon effect, so we suspect that was the culprit.

On Tuesday, Dave proclaimed he was tired of being a slug and agreed to go on a walk around our street/circle.  It's 1/3 mile.  Wednesday HE brought up the idea, and we walked the circle again.  Yesterday, he decided he would do a longer walk, and we went almost a mile.  He said he was struggling by the time we finished, but he didn't feel like a slug!

Dave lost another pound or two.  With all the fluids he gets, it's hard to gauge his real weight because it can vary by two pounds every 24 hours, but he was down over a pound this morning.

Dave will be back for blood work on Wednesday to see if his white cell count has improved, and we'll meet with Dr. S on 11/11 for a review and decision on when to start the 48 weeks of injections.  I've been saying the injections will each be 10 units (of whatever scale is used) but Dr. S. said today they will be 20 units each.  My understanding is that he is getting 40 units intravenously, so going down to 20 units isn't as much a drop as I thought it would be.  I will have to clarify.

Dave is in the chemo laz-y-boy; I hope he doesn't miss these comfortable chairs when he's not coming here every day.  I am not buying one for his den, even though he deserves a treat after this ordeal.  Maybe I'll get him a new pair of walking shoes.

CHEMO DAY 16 OF 20

I cannot tell you how happy we are this is the last week of Dave's intensive treatment!  He's hooked up now, and although I wrote less than 24 hrs ago, I thought I would let everyone know things are stable.  His weight is the same as last Monday (down 9 pounds), his white blood cell count, though lower than it should be, has not changed, the rash on his chest is clearing up and the one on his face is almost gone, his shoulder is no longer hurting, and he's controlling his headaches by staying hydrated.  The worse part is the fatigue.  Today he was a little winded walking up the slight incline from the parking lot to the front door of the Anderson Cancer Institute (there is valet parking, but we have not needed to use it).  This, in a guy who walked 1000 miles from PA to ME, through the White and Appalachian Mountains, climbing Mt. Katahdin at the end, just two years ago.

Our dear friend Kathy made us a fantastic cream of chicken soup, full of veggies and of course chicken.  Her hubby Dirke made the delivery, including a nice baguette.  Thank you! We were pooped last night, and it was the perfect meal.  Dave was in bed at 7:15, and I was not far behind.  He fell asleep right away, but I watched 3 episodes of Breaking Bad.  I needed a mental break from thinking about melanoma, but 2.5 hrs of watching meth madness wasn't good for my dreams!  Well, duh.

DALE'S VISIT

Gina and Dale

It's Sunday afternoon, Dave is napping and Dale and Gina are headed back to Atlanta. They arrived very late on Thursday, so we didn't see them until Friday morning.  Dale took Dave to chemo, Gina stayed here to work and I went to my clay class.  We all met back at home about 12:30 pm for lunch and compared notes on how our mornings were.  Dave's was more of the same - getting his treatment, having a very uncomfortable cold spell while getting the interferon drip, and finally warming up when he arrived home.  Dave was feeling no better, but no worse, and with the weekend arriving, we all had high hopes for a bit of a recovery.  In the afternoon, Dave took a long snooze, Dale worked and Gina and I walked to the marina.  It was a beautiful, sunny and slightly cool day.  Dale had stopped to get some hydrocortizone cream recommended by Rosemary for Dave's rash, so I applied it before he went to bed that evening.

Saturday Dave's rash was a little better, but he was not feeling any better.  He doesn't feel sick, he is simply very fatigued, which makes him feel as though he doesn't want to get out for a walk, and he wants to sleep a lot.  Dale and Gina were tired too, so we got a late start to the day.  Dave laid down for a morning nap while Dale, Gina and I went to the Village Art Show. Home for lunch, then Gina and I took Coleman to the Peter and the Wolf concert while Dave and Dale watched Georgia Tech trounce UVA.  When we came home from the concert, Dave took a nap while Gina, Dale and I had drinks on the back porch.  When Dave got up, we had dinner, then by 8 pm, Dave was ready for bed.  It was a late night for him!

Dave and I are enjoying the sunshine

Today is yet another beautiful day, so after breakfast we took a few pictures on the front patio.  We talked Dave into walking around Village Green Circle; we then sat in the sun and looked through some photo books.  We had a light lunch, and it was time for Gina and Dale to hit the road.  Now here we are - Dave in the bedroom, me at the computer, and needing to stop to do the laundry!

Dave hasn't seemed to have bounced back as well as he did last weekend, but we understand the effects of the IFN are cumulative and he has had 15 days of treatments.  One more week of intensive IFN... and we will be counting down the days!

CHEMO DAY 14 OF 20

Getting hooked up

Dave saw Dr. S. today before starting his treatment.  The doctor seemed pleased with the results of Dave's last blood work and vitals.  Dave has not had much change this week; his white cell count is still a little low, his liver indicators are good, his weight has stabilized, his lungs sound a little better, his rash is the same except he now has some on the side of his face.  He has quit using the neck warmer on his chest, so the heat rash theory may have to be discarded.  Dave is still very very tired, but ate a better dinner last night than he has had for a few days.

With his prayer shawl from St. Peter's

Dale and Gina are arriving late tonight and Dave seems buoyed by the anticipation.  Dale will take Dave to chemo tomorrow.  Saturday there is a lot going on - the Isle of Hope Art Show, the Village Fall Festival, and a Peter & the Wolf concert, in addition to the regular weekend activities.  I hope Dave is feeling well enough to walk around a little bit but we'll have to check on his white cell count.  He has had to stay away from crowds in order to not pick up germs.  We also have to see if he has any energy.

We're almost at the end of Week 3, with just one more week to go!

CHEMO DAY 12 OF 20

Dave is currently receiving his drugs and since I intended to write yesterday but didn't, I'll get to it.  BTW, there is internet here in the treatment room.  I just didn't find the right access on Day 1.

When Dave had his vitals checked yesterday (Monday) he had lost a total of 9 pounds in two weeks, his white blood cell count was fractionally better than it was Friday, his blood sugar is in the normal range, and there was some number related to his liver (I'll have to find out what it was) that is creeping up but not at a problem stage.  He had an itchy rash develop over the weekend and we're treating it with Benedryl gel. Today Dave came up with the idea that it may have been from his microwave-heated neck warmer, putting too much heat on his chest, so we'll watch the heat.

Dave's appetite has been decreasing and he didn't eat dinner last night.  Rosemary (NP) said to not worry - yet - and gave him a couple of bottles of Boost and Glucerna to try.  He has some "crackling" in both lungs so he is to do some deep breathing and coughing to prevent any fluid buildup that could lead to pneumonia.

Those are the vitals - now for the fluff.

Trying out a rocking chair 10/19/13

Dave had a pretty good weekend.  He slept well Friday night and was willing to go to a patio furniture store Saturday after breakfast.  Now that we have an awning to cool off our patio, I think it's time for a couple of comfy chairs.  We weren't out long, and went home for lunch.  We need to be careful about Dave being around too many people, and I give him the hand sanitizer every time we leave a public place. I knew this small store would be quiet, and we were the only customers there.

Coleman came to play after lunch, and wanted to get out the "bone and arrow."  Dave obliged and had him shooting for a while.  Our priest came by for a visit, so Coleman and I played kick-the-target-box while Fr. Sam and Dave visited.  Afterwards, Dave napped until suppertime.  Later, we walked around the Village Green circle.

Sunday was a similar day except we didn't go anywhere, not even to church because of the number of people.  However, flowers were delivered from our alter, and one of our friends came by to visit.  As he was leaving, Coleman arrived for more playtime (Chase had swim meets Saturday and Sunday).  He wanted to play more kick-the-box, so he and I were outside while Dave watched football.  Chad came to pick Coleman up and had a few minutes with Dave.  Dave napped in the afternoon then we went to our neighbors' home for a wonderful dinner.  We were home by 7 pm and Dave went right to bed.

Yesterday was breakfast, treatment, lunch, another visit with Fr. Sam who brought a prayer shawl, nap time, and as I said, no dinner for Dave.  He is a little slower today but hanging in there!

CHEMO DAY 10 OF 20 - MIDPOINT!

We're halfway through the daily chemo treatments - thank goodness!  From our daily discussions with Rosemary the nurse practitioner, and Dr. S today, we're led to believe Dave is doing extremely well.  Although he has acute fatigue and occasionally has muscle aches (the typical flu-like symptoms) he has not had any nausea.  In fact, the anti-nausea medication he was getting through the IV has been deleted from the orders, as it was causing other uncomfortable side effects.

If you are wondering what acute fatigue is for Dave, consider -- after getting dressed and having breakfast, he sits on the sofa or chair waiting for it to be time to get in the car.  He may or may not be watching the news.  (Although this morning he ventured out to our patio to talk to our neighbor who came to finish a paint job on our back wall.)  He falls asleep while getting his chemo.  He comes home, eats lunch and takes a nap that lasts from 45 min. to 3 hours. He may or may not take a walk around the block.  He's back in bed at 7:30 and after some time with his iPad, sleeps 9-11 hours.  He has trouble reading and talks slower than usual. He is eating healthy foods in small amounts and has lost 6 pounds in two weeks.  He is not drinking any alcohol but is drinking 1-1.5 liters of water a day in addition to his IV fluids, a cup of coffee and some hot tea in the chemo room.

I hate to think I may be exposing Dave's 'frailty' in a way he or I would later regret but if you know us, you know I'm doing it only out of my desire to keep our family and close friends informed about how he's doing.  He doesn't complain, but today he said, "I'm tired of being tired."  The fatigue seems to get worse every day, but now we have a weekend to recuperate. We were comforted by the doctor telling us, in spite of the low white cell count, the spike in his blood sugar one day, and the fatigue, compared to other people who have gone through this regimen, he is doing extremely well.  Dr. S did not believe the INF dosage needs to be weakened.

Thanks to everyone for your prayers, emails, cards, flowers, meals, and offers to help - taking Dave to chemo, painting our back wall and in your words "anything and everything." Sometimes I just cannot believe how fortunate we are to have such great friends and families. Here's to a wonderful (and relaxing) weekend for all of us!

CHEMO DAY 8 OF 20

Today is Wednesday, Dave's 8th day of treatment.  He had a good weekend, highlighted by the arrival of his brother Jeff and sister-in-law Bobbie from Houston.  Dave was fatigued, but able to function all day Saturday and Sunday without taking naps.  Then came Treatments Week Two.  Jeff took Dave to the ACI Monday and Tuesday while Bobbie and I played. Week Two is not going as well as Week One.  Dave's white blood cell counts are down and he has neutropenia.  He has to take precautions being around people and eating raw fruits and vegetables, and he has to wash his hands as often as possible.  However, his chemo regimen will not be changed for a while to see if the counts improve.

Dave routinely gets chilled when getting the interferon (INF) (but not the saline or other drugs) and we've come up with a fairly good way to combat it.  We take his 'neck warmer' - a fabric bag full of cherry pits (I believe) that can be put in the microwave.  We get it nice and warm, then Dave lays it on his chest and zips up his fleece vest.  He has a blanket on top of him as well as his windbreaker/jacket.  That combination seems to work until he can finish the bag of INF and the following bag of saline solution.  He was getting uncomfortably cold just as he finished up today, so I'm thinking of taking a second neck warmer with me tomorrow.

While they were here, Jeff and Bobbie were looking forward to visiting with Jeff & Dave's sister Sandy. They stopped by to see her Sunday and Monday, and Bobbie and I had coffee with Sandy on Tuesday.  It was a Howell reunion - though we were wishing Candace could have been here, too.

Bobbie took this picture on Sunday 10/13/13.  I love it that the Howell siblings are all smiling.  I'm not sure Dave has had the energy to smile today - so far.

A DAY OFF

Hurray, today is Saturday and Dave has a day off from chemo.  The previous two days were fairly uneventful, especially Thursday.  Friday Dave felt he was starting to get the chills again, so I made him more hot tea, the nurses put hot towels on his chest under his vest and added another blanket.  He made it through okay.

Dave was shivering so badly on Tuesday he thinks he pulled a muscle in his shoulder,  or perhaps somewhat damaged whatever repair was going on.  It's the same area where he had his lymph node surgery under the collar bone.  His shoulder area has been aching badly since then.  For two nights now he has been using a heating pad which seems to help.

Dave has been very fatigued and has taken a nap every afternoon except Thursday, as we had workers at the house.  We had an awning installed over our westerly facing sliders, and the workers needed supervision.  And a ladder.  And a broom.  And I don't know what else, I left it to my supervisor.

Friday was busy.  After the chemo, I was instructed on how to flush the picc line, and did it once so a nurse could watch me.  I'll be doing it once each day over the weekend.

Then we took Sandy out for lunch.  She was having a very good day although her arm (fractured in two places weeks ago) was bothering her near her elbow.  After taking her back to Savannah Square we stopped at Kroger's then the recycling area.  I had loaded the car days earlier with our paper, cardboard and plastic.  I was glad to get it out, as something didn't smell good, though everything should have been clean.  The car sits outside in 85º+ heat while we're at ACI, so something got ripe.  I was glad to get rid of that trunkful of junk.

Dave napped, our dear friend Liza, chef extraordinaire, brought over home made vegetable soup and a baguette which we had for a delightful dinner.  We sat outside under our new awning and enjoyed a drink, talked to our friends across the fairway who just returned for the winter (such as it is in Savannah), and decided all is right with our world.

Before

After

 After writing these first paragraphs, I went out to do errands and drove over our new, high, FINALLY opened bridge!  Dave was mowing the grass when I drove in the driveway.  Wow.  I cleaned up the front patio, put more water in the fountain, and tried to get a picture of our visiting hummingbirds, but I guess they are shy.

Now it's noon, and time for flushing Dave's picc line.  I did it!  Pin a badge on me.

CHEMO DAY 3 OF 20

I am happy to say today's treatment went very well.  Dave wore warmer clothes, he drank 3 cups of hot tea, and everything went smoothly.  His blood pressure was a little low, possibly due to the Demerol he had yesterday and not enough fluids to wash it all out.  He had been wanting a bowl of French onion soup, so we went to Panera's for lunch where he could satisfy his craving.

Dave took a nap in the afternoon and later we checked on a neighbor's house (which we do while they are away), walked to the dog park then home.  We covered about two miles, the first exercise either one of us have had in several days.

The main entrance to Memorial

This evening Dave has had a slight temperature, his shoulder is bothering him, and he is feeling very sluggish.  He said this is the worse evening he's had.  We know the effects of the drugs can be cumulative, so we can expect even more symptoms as time goes on.  We'll try to combat them, though. You've heard, "Better Living Through Chemistry"?  I believe it!

One correction - the hospital we go to is Memorial Health University Medical Center.  When I wrote yesterday, I left out the most important word, Health!

Associated with the hospital and on the same campus is the Curtis & Elizabeth Anderson Cancer Institute (ACI), which is where Dave's oncologist has his office, and where Dave gets his chemo.

CHEMO DAY 2 OF 20

A little housekeeping --

1. For those of you new to the blog, the very simplified background is that we discovered Dave has metastatic melanoma, Stage IIIC, and is undergoing chemo (more accurately immunotherapy) to hopefully kill off any remaining melanoma cells in his body.

2. I learn as the days go on.  Today I learned the 'vein pick'/'pick line' is actually a "PICC line" (peripherally inserted central catheter).  You will just have to bear with me as I spread my misinformation then try to correct it.

3. I don't intend to write every day, as I hope the daily visits to the Anderson Cancer Institute become routine and uneventful. When there is something I think is interesting, I'll write.

Now for the update --

Dave had a good night last night and felt just the slightest bit achy this morning, but after taking Tylenol he felt fine.  He did not need his additional nausea medicine last night.

With a tourniquet on his arm awaiting the ultrasound.

I think this is my first selfie.
If I wanted to watch Dave
getting the picc, I had to
wear the mask.  Or maybe the
nurse thought I had bad breath.

We left this morning in the pouring rain for a 7:30 AM appointment to get his PICC line.  We thought it would be easier on Dave and his veins to get one since he has to have IVs for 20 days.  I dropped him off at the door to Radiology (Memorial University Hospital), where he would get the picc, and I parked the car by the Anderson Cancer Institute.  The parking lot was flooded and there was no hope of keeping my feet dry.  Once in the ACI, there was no one around to give directions to Radiology, most of the hallway doors were closed, I kept running into dead ends, so I had to go back out in the rain to get to the place where I dropped Dave off.  Oh well, such a minor problem.

The PICC in Dave's arm.

Between the paperwork, sterile preps and the actual insertion, about an hour went by.  I am so unfamiliar with hospital procedures, I thought it would take about 5 minutes.  I learn as I go!

The tube inside Dave's arm is 28 cm (about 11 inches) long and goes to the basilic vein, a large vein in his chest near the heart.  An ultrasound was used to locate the vein it was going in, then the nurse just pushed it in.  Oh my.  The line needs to be flushed with heparin daily, but I'll have to do it only on the weekend, as otherwise the nurses in the chemo treatment center will do it. Thank goodness.  I get squeamish about this bloody stuff.

Dave was able to start his daily infusion about 9 AM.  He was almost finished but about noon he started getting cold and suddenly had the shakes.  He kept asking for blankets, and ended up with three on him, all doubled, another folded up on his chest, a zip-lock bag of hot cloths on his chest, and the vest he brought for warmth.  I even texted Chad to see if he had a jacket in his office.  Dave was given more Benedryl and hot tea, but he was shaking everywhere, his feet, his hands, his lips...  The nurse then gave him Demerol, and in about 2 minutes he was out.  Totally relaxed and asleep.  One of the other patients heard me say I'll bring a warmer jacket for him from now on, and he said we should bring a cap, and wool socks, too.  It was scary to me, but the nurses said this is not an uncommon side effect.  When Dave came to, he could hardly speak as his tongue wouldn't work.  I felt so sorry for him but I was also laughing.  He kept asking how to flush his picc line (which I wasn't going to worry about until Friday).  He also said if there's an outlet, he wants to bring an electric blanket.  He was given extra fluids to wash out some of the drugs, and we were finally on our way home at 1:15.  Whew.

Dave ate a bowl of soup when we came home, and now he's napping.  The nurses told us again Dave needs to keep the Tylenol in his system around the clock, but not to wake him up to take it.  I'll make sure it's handy in case he wakes up at night.

CHEMO DAY 1 OF 20

So far so good!  It's just after dinner and Dave has survived without nausea today, knock on wood.  He was drowsy this afternoon and took a nap as soon as we arrived home.  (He said he slept okay last night, though I did not.)  This evening the skin on the back of his neck is feeling "raw" and it looks a bit reddish.  We were told some people have a mild allergic reaction to interferon (INF) so maybe that's what it is.

Selecting a book to listen to from his iPad
Oct. 7, 2013

We arrived for our 9 AM appointment and met with Rosemary, Dr. S's nurse practitioner.  She was surprised Dave didn't have his pick line (what I previously referred to as a vein pick).  Turns out there was a little snafu trying to get it arranged on a Friday afternoon after our last appointment, but it is now scheduled for 7:30 AM tomorrow.

It was not a problem; Dave has good veins and the IVs were started by 9:30.  First he had a bag of a saline solution for hydration, then Atavan for anxiety, an anti-nausea drug, Benadryl for any allergic reactions, then the INF (the smallest bag of all) and finally another bag of the saline.  He also had two Tylenol tablets when the IV was put in, and is supposed to continue taking Tylenol around the clock.

Dave was seated in a recliner with two pillows and a blanket.  He listened to his book-on-iPad, had a little cat nap, and I went through the Savannah News, four magazines and did a little bit of emailing.  We don't have wi-fi there, can you believe it???

Dave ate a small lunch and dinner and has been drinking lots of water per instructions.  He didn't get any exercise today though.  I went out this afternoon as I take Coleman to an art class on Mondays, but on days I'm home I hope to get Dave out for a walk.  We even talked about going to the pool this afternoon as it was 88º and sunny, but that's when Dave needed his nap.

We've been told to expect nausea, aching, and probably a fever as the INF kicks his immunity system into high gear.  Let's hope none of this comes into play and we both get plenty of rest tonight!

MEETING WITH THE NURSE RE: CHEMO

I'll start at the end - Dave begins his chemo on Monday, Oct. 7 at 9 AM.  The first event will be getting the pick in his arm which will remain there for the month he's getting the IV infusions. After getting the pick he'll have about an hour's worth of fluids, then an anti-nausea drug and finally the interferon.  The nurse practitioner, Rosemary, told us to expect to spend about 3.5 hours there the first day, and subsequent appointments may drop to 2.5 hours.

Now I'll back up a bit.  Rosemary has been with Dr. S only 5 days; she worked elsewhere previously.  She seems very knowledgable and organized though there were just a few procedural items she needed to learn e.g. she wasn't quite sure how often Dr. S expected Dave's blood to be drawn to check on his cell counts and liver.

Dave will be getting a dosage of 40 million international units/m2 by IV infusion for 5 consecutive days per week for 4 weeks, then he'll move into the maintenance phase with 10 million international units/m2 given subcutaneously (self-injected) 3 times per week for 48 weeks.

We were given a book on chemo, its side effects and what we can do to alleviate them; a book on nutrition "before, during and after cancer treatments" and a sheet that is specifically on interferon and its side effects.  Rosemary answered every question we had, from "how high a temperature reading should result in a call to the doctor?" (101º) to "how do we know if the anti-depressant isn't working?" (he won't want to get out of bed, see people, etc.).

Although an anti-nausea drug will be given intravenously, it may wear off during the day so Dave was given a prescription for Promethazine that he can take as needed.

He was also given a prescription for Sertraline (Zoloft).  Both Dr. S and Rosemary strongly recommend using it, as depression is a very common side effect and it is better to stay on top of it rather than try to manage it later in the process.  We stopped at Target on the way home to fill both prescriptions.

Dave is to drink 3-4 liters of fluids a day (though the first month he will get one liter intravenously), take no more than one 30 minute nap per day, and exercise - even if it is just walking - as much as he can.

Rosemary seemed confident that whatever side effects Dave has can be managed so he will not be "sick" during his treatment.  He is expected to feel fatigued, and perhaps achy, very similar to feeling like he has the flu.

We stopped in to look at the treatment room and met the nurse who will get Dave hooked up on Monday.  He will also be seeing Rosemary every morning before his daily treatment. We're feeling more optimistic about the upcoming month than we were (or at least I was) after reading story after story online.

And now, it's after 5 o'clock!  We're headed to LandingsFest for dinner, tomorrow Dave is kayaking, Sunday is church and a family dinner.  We have lots to do before 9 AM on Monday!

WE HAVE A PLAN

We met with our Savannah oncologist today.  I'm going to call him Dr. S (for Savannah) from now on. The only reason I hesitate to give his real name is because if I don't accurately describe what he tells us or if I don't precisely describe his treatment plan, I do not want you to question his ability.  I may get things wrong or simplify too much, and that is my error.

Back to the visit.  We told him what our MD Anderson doctors recommended - the 'standard of care' adjuvant therapy - which was what he also recommended.  Dr. S also told us radiation was an option, and MD Anderson told us surgery was an option, but Dave has decided to go with the interferon therapy.  He is ready to get started and hoped he could be in the chair on Monday, but Dr. S said there were a few things that had to be done first.

One, we have to be sure all the insurance plans are notified and are in place.  This should be no problem with Medicare and Dave's very good supplemental BC/BS plan he was required to purchase when he decided to stay on TVA's plan so I could be covered.  Whew.  (He has quit complaining about the expense of the supplemental after seeing the first round of EOBs.)

Two, he has to speak with a Nurse Educator about the process, the medications, the administration, etc. His appointment with the nurse is next Friday. He will also get a vein pick in his left arm (his tumor was in his right arm) so the nurses don't have to find veins to inject the IV every day.

Third, they had to draw blood for baseline data, so they can watch, in particular, his liver function and blood cell counts.  Dave asked if that could be done today, so after talking to Dr. S, he had his blood drawn.

Assuming the other two items get done next week, Dave will start his therapy on Monday 10/7.  He will have infusions 5 days a week for 4 weeks at a high dosage level.

I asked Dr. S if Dave can take benedryl (minimizes his snoring), have a cocktail, and get a flu shot.  He said, Yes, yes and yes.  From what I read on the internet, I was surprised he is allowed to have alcohol.  Dr. S said 1/day is okay, although Dave may lose his taste for it.

I asked about anti-depressants, and as I said to Dr. S, Dave has never exhibited depression, but I've read it is a very common side effect.  Dr. S said anti-depressants are a routine part of the treatment, as is anti-nausea medication.

It was an educational and motivational meeting, and now we'll have to cool our jets for another week.  It gives Dave time to get in more kayaking, swimming, loading up his iPod with books to listen to, etc. etc.  It will be a busy week!

Testing, Testing

This is actually Molly writing, and this is a test post to see if I can make it work.  Mom and I figured there are going to be times over the next few weeks and months where she'd like to keep people updated but won't have the time.  This way I can do it.  Here's hoping this actually goes up when I push the 'publish' button!  Best, Molly

UPCOMING APPOINTMENT

Dave has an appointment with his Savannah oncologist this coming Friday, 9/27.  We will be discussing the what, when and how's of his adjuvant (additional) treatment.  It's been recommended both by this doctor, as well as the melanoma specialists at MD Anderson, that Dave have the "standard of care" interferon treatment.  We've been referring to it as chemotherapy, but technically it is not, it is immunotherapy.  However, it is toxic, with many potential side effects, and is given intravenously for 20 days (Monday-Friday for four weeks) so people tend to call it chemo.

After the first month, Dave will inject himself 3 times a week with a lower dosage for the next 48 weeks or more.  If he gets through the first month (the 20 treatments) without many side effects, he may instead get a higher dosage injection just once a week instead of the 3x/wk. To be determined...

Dave is eager to get started.  He says, "The sooner I get started, the sooner I'll finish."  He has a great attitude and is certain he will not be an invalid.  He is out kayaking today, and has been swimming almost daily to get his strength up.  I like his attitude!

NO SURGERY!

Dr. Ross (MD Anderson surgeon) called this morning to further discuss surgery with Dave.  We had put together a list of questions to prepare for the discussion, which mainly centered around the risks and benefits of removing more lymph nodes in addition to having chemotherapy.  Although Dr. Ross fully and carefully addressed our concerns, he said it sounds as though Dave would prefer to forgo surgery.  He (Dr. Ross) said because there were so few melanoma cells found last time, he did not feel strongly about the benefits of surgery, so let's just go with the chemotherapy.  That's what we'll do!

Dave has a call into our local oncologist's office to get the chemo set up.  It feels good to have a plan!

SURGEON'S PHONE CALL 9/18/13

We FINALLY heard from the surgeon who performed Dave's Aug. 8th lympadenectomy.  As you may recall, Dave's case was to presented to the conference of MD Anderson multidisciplinary melanoma specialists on Sept. 9th and we've been waiting to hear the results of the discussion.  In a nutshell, the recommendation is for chemo (interferon) with the same schedule as our local oncologist described.  The uncertainty was whether or not to do additional surgery to remove more lymph nodes.  Dave is weighing the pros and cons today, and we will talk to the surgeon again tonight to either schedule surgery or just a follow-up visit to Houston.  Dave will have the chemo in Savannah.  We don't have a timetable for that.

I would like to provide more detail, but I have a clay class to get to this morning.  I'll write more after our discussion with Dr. Ross this evening.

ONCOLOGIST APPOINTMENT IN SAVANNAH

Today we met with Dave's local oncologist.  The doctor had reviewed the results of Dave's lymphadenectomy at MD Anderson, and had talked to Chad, therefore was aware of the finding of melanoma in one of the lymph nodes.  He spent quite a bit of time talking about options, but was quite clear he was supportive of Dave's relationship with the doctors at MD Anderson.  In fact, he was very interested in what recommendations they were going to give Dave.  We are grateful he is supportive and not at all put off by the fact we are consulting doctors in another cancer facility.

He said it was possible but not probable that with the removal of the cancerous lymph node, all the melanoma was removed.  A PET scan may not pick up on a tumor until it is about the size of a pea, so although Dave had a negative PET scan, there is no way of knowing if there are more melanoma cells floating around that have not yet developed into a pea-sized lesion.

Bottom line:  his recommendation for treatment would be radiation and chemo (interferon) which would last 12-18 months.  He was careful to give us several caveats, including the fact that metastatic melanoma is not curable, radiation will not be able to kill any cells that aren't in the target area, and interferon is generally recognized to lower the risk of recurrence by only 5 "to maybe" 10%.

There is a question of whether the discovery of melanoma in Dave's lymph node, and only his lymph node, technically qualifies him as having metastatic melanoma.  Whether or not he has metastatic melanoma can make a difference in qualifying for clinical trials.  Dave has not been eager to participate in the one clinical trial for patients with non-metastatic cancer, but he may be interested in one for patients with metastatic melanoma that has been getting good results. That trial is not being conducted in Savannah, however.

Now we have our local oncologist's recommendations, and we will know what MD Anderson has to say early next week.

WAITING FOR INFO

Dave's case was presented to MD Anderson's Melanoma Multidisciplinary Conference on Monday 9/9/13. At this conference, there were melanoma surgeons, oncologists, pathologists, radiation oncologists and radiologists. The purpose was to discuss the best treatment plan whether it be surgery, adjuvant systemic treatment, or observation.  To date, we have not heard the results, but we've been told Dr. Ross, Dave's surgeon, will be in contact with him 'early next week' hopefully the evening of Monday 9/16 or Tuesday 9/17.

As I mentioned in the previous post, Dave was tentatively scheduled for another lymphadenectomy on 9/20, but that date has been removed from the online schedule.
Dave is not now scheduled to see Dr. Ross until February for a 6-month follow up of his lymphadenectomy.  We are assuming there will be no further surgery, at least for awhile, but we don't know for sure.

In the meantime, Dave has an appointment with his Savannah oncologist tomorrow, to discuss the results of his last surgery, and learn what this doctor recommends for treatment.
Hopefully, we will get the phone call from Dr. Ross on Monday or Tuesday.  We're waiting...

PLANNING TIME

On the beach at Wild Dunes 9/7/13

We left for the beach Wednesday with Dave's sister Sandy, returning a few hours ago.  We stayed at Molly and Chad's "Seascape" in Wild Dunes.  We had perfect weather, daily long walks on the beach, time at the pool in the afternoons, a trip into Mount Pleasant to have breakfast with Mom and today we ate lunch at Red's Ice House on Shem Creek so we could watch the boats and kayaks.  It was a great four days in a fabulous place; thank you Molly and Chad!

Our spirits were lifted by an email Dave received minutes before we left on Wednesday.  We learned Dave's case will be presented to a council of multidisciplinary melanoma specialists at MD Anderson this coming Monday.  They will let us know what their recommendations for future treatment or monitoring will be.  Dave is tentatively scheduled for more surgery on 9/20/13, to remove additional lymph nodes in the more difficult spot, under his clavicle.  The number of lymph nodes known to have melanoma tumors is a way to stage the progression of the disease. Dave had melanoma in one of the two removed in that area, but it sounds as though they want to see if that means 50% or if it means one out of maybe five or so.  We are learning.  The meeting on Monday may change the schedule for surgery.  I will post what we learn as soon as we get the news.

A SHIFT IN THE WIND

We were eagerly looking forward to getting the final pathology report, certain it would confirm all the other scans and path reports that Dave was cancer-free.  That was not the case.  In one of the two lymph nodes taken from Dave's clavicle area, a melanoma tumor was found. That changes things.

I could speculate about what options we'll have, but I think it's better to wait until we have a chance to talk to the doctors again, now that we know his melanoma is in-transit.

Jimmy & Diane McCallum and Dave

We found out Wednesday, Aug. 28th, just before we were having friends over for dinner.  Thursday Dave started making phone calls to get new appointments, and we both had things we were doing with friends in the afternoon.  Friday there were more calls, and our fabulous son-in-law went to the hospital on his day off (!) to (among other things) get in touch with Dave's oncologist.  Friday afternoon our friends Jimmy and Diane McCallum arrived from Macon to spend a few days with us.  Their timing could not have been better.  Dave and the McCallums have been friends since long before I knew him. It was great for Dave to be able to relax with people who know him so well.

I keep reminding myself Dave has a very unusual history with melanoma, with 2 small tumors in 7 years.  We'll keep hoping and praying this latest revelation is fairly inconsequential.  We're not in denial, we're hopeful!

GREAT RESULTS!

Finally, Dave heard from his surgeon's office with the good news that no cancer cells have been found in the lymph nodes that were removed on Aug. 7th!  It is just what we expected, yet we were still on pins and needles waiting for the confirmation.  As it turns out, the pathologist is doing two types of testing; the first type is finished but the second is not.  That means we still have more results to come, but we still expect a 'clean' report.

I don't know why a second set of tests are being done.  Dave talked to Dr. Ross's PA and I didn't; I usually have a lot more questions.

This diagram shows exactly how the sentinel lymph node biopsy was performed on Dave.  Even the location of the tumor is where Dave's tumor was.  I had seen these pictures earlier, but didn't focus in on them, so this should have been posted earlier.  Oh well, live and learn.  The only difference was that Dave had a second injection of the radioactive substance, since the first amount didn't drain to lymph nodes (having gotten 'rerouted' by his scar tissue) and he had a second incision once Dr. Ross saw that the substance flowed to a second set of lymph nodes deep under his clavicle.

The dye that is referenced in the first picture is a blue dye.  Dave has an allergy to an ingredient in it, so only the radioactive substance was used, though they initially planned to do both.  Now a blue dye is involved in the second set of testing on the node (the results we haven't yet heard).  I don't know if it is the same blue dye or not.

Dave has been recuperating extremely well.  After several days of feeling sluggish in the afternoons, he's back feeling like himself.  Not only that, he decided to start swimming for some regular and hopefully ongoing exercise.  Naturally I was concerned about the arm movements pulling at his incisions, but he said he doesn't feel any pulling, and he feels the pull in his back rather than the front.

His SteriStrips are coming off at the edges but have not fallen off.

And here he is, back from his morning swimming!

HOME RECUPERATING

Dave had his biopsies done on Wednesday, August 7th, and today, Monday the 12th, is the first day he's felt like he's had a 'normal' day, energy-wise.  Until now he's been very tired in the afternoons, quite understandable after being under anesthesia.

We spent all day Saturday and about 5 hours Sunday in the car for our drive home.  Thank goodness for books-on-CDs.  We listened to Dan Brown's The Lost Symbol and Vince Flynn's Extreme Measures.  They sure help the time go by!  Dave wore compression hose (which were given to him in the hospital) since he would be sitting for so long, to help avoid blood clots.

He has two almost three-inch incisions, although they look much bigger and scarier to me. He has dissolvable sutures, and SteriStrips, which is the bandage (just a tape).  You can see the blood underneath - yuck - why did I ever start out majoring in Nursing at UConn?  He is not supposed to pull the SteriStrips off, as they are holding his skin together.  They should fall off eventually.  He had to wait 48 hours before taking a shower, and he could not wait to get into the shower when the time was up.

Dave has taken only one pain pill, and that was because I made him, on Wednesday night. He insisted he didn't need it, and I insisted it would be good for him to be able to sleep.  My argument fell on deaf ears after that.  He's feeling quite well, though of course his incision areas are tender.  He said his chest feels somewhat 'heavy' this evening, and I'm thinking it should be another early-to-bed night for him.

Dave was out today, back to his care-giving for Sandy.  He picked up her meds, made phone calls about her medical bills, stopped by to see her, and did a few other errands.  I think he really deserves an early evening!

We are now awaiting results of the biopsies, though we will be extremely shocked if they do not come back negative.  I will update this blog as soon as we hear anything.

BIOPSY DONE

Dave was taken to the OR at 2:10 and I was told it would be about an hour until he would be in Recovery, then another hour until he's ready to go.  Well, 3 hours later I asked for an update and was told he was still in surgery!  Finally at 5:40 I was told he was in Recovery and I could see him.  A little concerning!

There were two delays.  First, the radioactive injection done at the new surgery site would not drain, so Dr. Ross had to order more of the radioactive substance.  They give you only enough for the surgery so it won't be sitting around unused, which meant more paperwork and waiting for delivery of the second batch.  It arrived, and Dr. Ross injected it in Dave's old surgery site, just above the new site.  It went merrily on its way, but surprisingly, it did not all end up in the axillary lymph nodes (armpit), some of it went to a set of nodes under his collarbone!  Dr. Ross said this was unusual, but since that was the path of drainage, he felt he had to biopsy those lymph nodes, too.  Hence, the second delay; a second incision that was not expected.  It was a very deep cut, and he had to go through muscle.  He said this incision will cause Dave more problem than the one in his armpit.

One lymph node was removed from Dave's armpit and two from his collarbone area.  It will be 5-7 days before we get the results, though of course we are expecting him to be as clean as a whistle.

At 5:40 Dave was in Recovery, and it was 8:00 before Dave was awake enough, dressed and transported to the front door.  In the meantime I went to the pharmacy for his pain medication and got all kinds of care instructions from the nurse.

When we got back to Jon and David's, there was a Mexican take-out dinner waiting for us! Dave ate yogurt and a plain chicken fajita, but I gobbled up all the fixings.  What a treat after a very long day.

ILP DECISION

I'll cut to the chase; Dave is not having the Isolated Limb Perfusion.  After a long discussion with Dr. Ross' PA about the pros and cons of ILP, Dave felt the scale tipping toward yes. Then Dr. Ross came in, asked Dave questions about the sequence of events that brought him here (going back to his first tumor), gave him a skin exam, and said he didn't think any further treatment was necessary at this point.  He said it's rare for a patient to go 7 years without a recurrence as Dave did, and considering it was so close to the original spot, and the PET, CT and MRI scans show no evidence of the disease, he believed it would be better to wait and see rather than over- treat.

Some thoughts were repeating themselves in our minds: if Dave did not have the ILP, and he gets another recurrence, would he regret his decision, would he regret not being more aggressive, and would he be constantly worrying?  Would he be a happier person if he had the ILP just because it seems to be the best possible treatment available?  Dr. Ross said he would do the ILP if Dave really really wanted him to, but the fact of the matter is, if Dave gets a recurrence in his arm, he would still have the surgery and ILP options.  If he gets a recurrence anywhere other than his arm, the ILP would not have prevented that anyway.  Dave is a very healthy 65-year old, he is in the 1% of the melanoma population that went over 5 years without a recurrence, and the ILP does carry risks.  Why not carry on, live a healthy life and be vigilant about monitoring?

Dr. Ross performs more ILPs than anyone else in the USA, sees thousands of patients, and since he felt ILP was probably too aggressive, Dave was happy to comply with his recommendation.

Dr. Ross did recommend having a sentinel lymph node biopsy done, which is scheduled for tomorrow instead of the ILP.  This is really more of a double check - the scans showed nothing, but a biopsy will be even more accurate.

If you want more detail, here is a good explanation of a sentinel node biopsy:
http://www.cancer.gov/cancertopics/factsheet/detection/sentinel-node-biopsy

Dr. Ross noted the dermatologist and the surgeon in Chattanooga (from Dave's first tumor) both thought Dave's tumor looked like a secondary site, but could not find a primary site.  That leads to two possible conclusions: 1) The primary site 'regressed' yet a distal site was formed, or 2) The first tumor actually was the primary site although it didn't look or act like one.  Both scenarios are very unusual, and that coupled with the fact Dave went 7 years without a recurrence leads Dr. Ross to believe there is a chance Dave could go another very long time without another recurrence.  So again, he recommends the sentinel node biopsy and after that, structured monitoring.

Oh what a relief it is.

LAB, CT SCAN, CONSULTATION

Today Dave had lab work done - results were "perfect," CT scan - results were no change to the spots on his lung and liver, which is just what we wanted, and finally, a second consultation with the melanoma specialist Dr. Bedikian.  We were trying to ascertain whether Dave should or should not have the ILP.  Dr. Bedikian's attitude is, "Why wouldn't you?" He emphasized that if Dave's melanoma is 'in transit' the ILP will have no effect on his longevity. If it was a local recurrence and not in transit, the ILP reduces the risk of recurrence by 80%. What is the risk of recurrence without ILP?  That seems to be the biggest unknown, as today he said 30% although that is a general number, and Dave is at higher risk because 1) he has already had one recurrence and 2) it was under his skin which make it more likely to be in transit.  Confused?  So are we; as we have heard and read many different probabilities of recurrence.  We have to keep telling ourselves that no one knows the answers, and we have to do what feels right after ingesting/digesting all the information we can.

Dave's wrist after injection of contrast for CT scan

The problem with trying to treat melanoma is that since it is such an aggressive disease, and yet every person (body) is different, it is extremely hard to tell if treatments are effective, or if the disease would have acted the same regardless of treatment.

We asked how well ILP patients recover and if most regain full usage of their arms.  Dr. Bedikian said the most prominent problem he sees is skin damage, though over time it heals.  He also said he may be seeing only the patients that are the healthiest after the procedure.  He doesn't do the procedure, and many of the patients (like Dave) would be returning home rather than to him for follow-up, and if they require different and/or additional treatment, they may go to different specialists for on-going care.

We meet with Dr. Ross tomorrow; he's the surgeon who performs the ILP.  I'm sure he can provide more specific and hopefully more useful information.  Dave's ILP is scheduled for Wednesday, though he can cancel tomorrow if he feels it is not the right thing for him.