DEC. 2nd ONCOLOGIST VISIT

Forgive me, family and friends for my very late post about our visit to Dave's oncologist,
Dr. S, last Tuesday Dec. 2nd.  Since you've waited so long, I'll give you the good news before I get into a few details.  Dr. S. is not recommending any treatment for Dave's diagnosis of Stage I testicular seminoma.

A little background -- seminoma is found in only about one-third of all testicular cancers, and rarely found in men over 35.  There is a type of testicular cancer that is found in older men, but that is not what Dave had.  He had the young man's cancer (fist pump from Mr. Howell).

His testicle (but not scrotum) was removed and the 3 cm. tumor - almost 1.5 inches - was intact and no cancer cells were found in the rest of the testicle or in the spermatic cord.  In other words, he had clean margins.

The treatments available are radiation and chemotherapy.  Because testicular seminoma is nearly 100% curable by surgery and Dave had clean margins, Dr. S. felt there was no need for radiation, and was absolutely opposed to the chemo prescribed for seminoma.  This type of chemotherapy inhibits your immune system, whereas the 6 months of chemo Dave had for melanoma was meant to greatly boost his immune system.  None of us want to undo whatever good was done with Dave's 6 months of tough interferon treatment.

Dave's next visit to MD Anderson is in mid-February.  Dr. S. said he would like to hear what the Houston doctors have to say, as in all his years of practicing oncology, he has never had, or heard about a case where a melanoma patient develops seminoma.  Knowing this occurrence had to be very rare, he requested additional tests run on the tumor to make double and triple sure this was not metastatic melanoma.  His final declaration to us was, "This was bizarre."

Dave has healed amazingly quickly.  Both Dr. S. and Dave's urologist were impressed at how well he is feeling and how well his incision healed.  And in case curious minds want to know, all his parts are working just fine, thank you.

And yes, Dave did dance, all night long, at Libbie's wedding.  We really put the thanks in Thanksgiving this year!

POST OP DAY 8 - NOT MELANOMA!

HUGE sighs of relief are coming from the Howell Household.  The urologist called today to tell Dave his tumor was indeed cancerous, but it was not melanoma.  It is seminoma.  I know nothing else, other than what I've googled.  I was at a meeting when Dave got the call, so I didn't get to hear any details.  I am a little confused, as I thought seminoma was one of the cancers the blood test would have identified.  I'm sure I just didn't understand, but this was a surprise.  A good surprise.

Dave's next appointment is with his oncologist Dec. 2nd where we will hear the treatment options - or maybe there will be no treatment necessary.  I'm tired and don't want to pass on any incorrect information or assumptions, so I'll stop here for now.  We are so thankful.

AND STILL NO PATH REPORT

You read that correctly folks, no report yet on what Dave's mass was!  He had an appointment with his urologist this morning and we were told the lab was 'ordering a stain.' I asked if that meant his cells (on the slides) were something other than routine, something unusual.  I thought all they had to do was look at them under a microscope and we would know what they are.  The doctor said, "This whole adventure has been unusual," without really saying yes or no.

My interpretation of what he told us was that the lab was out of a particular stain (like Ritz dye) they needed to further examine Dave's cells, and they had to order some from the stain store.  Don't laugh too hard, those of you who know better.  What he meant was 'a stain' is a very ordinary type of procedure, and the lab was ordering that procedure.  Oh. (And I think that's right - if I understood Molly correctly.)

So we are not to read anything into the fact that a stain was ordered, or that it has taken so long.  Both Dave's urologist and oncologist were dismayed at the delay.  AND SO ARE WE.

The urologist removed the staples from Dave's incision, which has left him with discomfort this evening.  The doctor said the incision is healing well, at least it looks great.

A special thanks to Paul today, for being Dave's chauffeur and spirit lifter.  I went with Dave to the urologist, but then I went to a makeup clay class, to my podiatrist, and shopping for shoes I can wear to Libbie's wedding, and a wrap for my sleeveless dress.  The countdown is on to the wedding weekend, and there are too many places I need to be, all at the same time.  So thank you Paul for helping Dave take care of Sandy while I did my To Do List.

Tonight we celebrate - unfortunately not the results of a lab report - but with some of our great friends here in The Landings.  I'm going to dinner with The Belles to celebrate Allison and Fran's birthdays, and Allison's husband Bob is picking up Dave for their own dinner out. What in the world would we do without our fabulous friends???

STILL NO PATH REPORT

It's Post Op day 5.  The work week has come and gone, and we did not get the results of the pathology done on Dave's mass.  Just thought I'd let you know so you don't think we're celebrating or bemoaning the results without you.  Dave has an appointment with his urologist who performed the orchiectomy (otherwise known as the nutcracker) Monday morning.  In the meantime, I say no news is good news.

Dave turned a corner yesterday.  I was at a class Friday AM and he forgot to take his pain pill, which I didn't know.  He took a nap in the afternoon and got up an hour after his next scheduled pill and when I reminded him he was overdue, he decided he didn't need it.  He felt since he skipped the 10 AM pill and felt okay, he would forgo the 4 PM pill as well.  He hasn't had one since.

Of course he is nursing his incision site but he's much better at remembering to protect it when he moves by being very careful about how he moves.  I'm glad he has been taking afternoon naps, as that seems to give him relief.

He's getting cabin fever.  It spiked at 150º yesterday.  He needs a hobby or project to keep him busy that doesn't require a lot of movement.  He's bored with television, and solitaire so I gave him a stack of his unread books.  I wish I could get him to learn to knit, or work on my To Do List.

I've missed (and will miss) some of my clay classes due to all these doctor appointments.  I need to go to Michael's this morning to get a tool to use on my project at home.  I dread going on a Saturday as the shopping season has begun, but here's an idea for Dave.

ONCOLOGIST VISIT; NO PATH RESULTS YET

Let's start with some good news; Dave feels a little better.  Hooray! He is learning (and remembering) how to ease himself in and out of chairs and in and out of bed.  Those first few nights were pure agony for him and it is such a relief that he is better at managing his movements.  Speaking of movements, this is Dave's favorite new (to him) wonder drug.  Required to balance the only annoying effect of the pain medication.  Enough said.

This morning was the first day Dave wasn't watching the clock for his pain pill, and in fact I had to remind him to take it.  As soon as he swallowed it, he said he could tell he was due as the incision area was starting to throb.  It's not good to let the pain get ahead of you.

We had a late morning appointment with his oncologist.  Dr. S. had not received the pathology results, so he called Dave's urologist to see if it had become available.  It had not.  He examined Dave's incision and said considering Dave had this surgery just three days ago, both he and the incision look remarkably healthy.  We discussed options for treatment if the mass turns out to be melanoma, and set up another appointment for early December for further discussion.  In the meantime, Dave and I will be looking into the use of Yervoy (ipilimumab), as that may well be the recommendation.

Yesterday Dave had an appointment with his dermatologist, and she found nothing on his skin to warrant further examination.

Now to the fun part -- what made us laugh today?  A LOT?  Kim Kardashian's nude photos and the flurry of photoshop activity that it started.

POST OP - DAY 1

Dave is better today thank goodness!!!  He slept fairly well as long as he stayed on his back, but habits are hard to break.  Every time he tried to roll over, there would be a very sudden reminder that all was not well down south.

A little background ... Dave avoids medication at all costs, or almost all. He was on pain meds for only about 24 hours after his lympadenectomy in Houston a year ago.  He is on no prescription meds, and won't take daily vitamins or an aspirin.  BEFORE his surgery yesterday, he considered not filling the prescription for the pain meds we knew he would get, as after all, he has some left over from last year, and really he won't need them.  ahem  cough cough

He can take a pain pill once every six hours and he had one at 4 AM.  When he woke up at 7:30 (still drowsy) he asked if it was time to take a pill.  I think those 2.5 hours until 10 AM were some of the longest he's endured.  I don't want to exaggerate, he was not in terrible pain, but there was enough that I caught him checking the clock, or asking what time it is, quite often.

Molly knows how Dave is, and she called this morning to emphasize that he needs to take the medication on schedule so the pain doesn't get ahead of him.  For once, this was not a problem!

Dave got up, made his oatmeal, and feels pretty good when he's standing up.  He shaved, and he got dressed, needing help only to get things over his feet (pants and socks) as that requires a lot of bending and stretching. He was advised by the doctor's office to get and wear tightly fitting underwear for the next two weeks, so he has some new underwear.  I managed to talk him into letting me take a picture.  Of course that was about an hour after he took his happy pill.  I thought if I'm going to blab about all his intimate experiences, I may as well post a picture, too.

You can see the walker on the left side of the picture.  It's been in the attic for 4 years, except for when I had my toe surgery a month ago.  Back it went after about a week, but I pulled it out for Dave this morning.  He doesn't need it to walk, but he's learning how to use it to get in and out of chairs.  Mr. Mechanical Engineer likes to figure out how things work, including the human body.  Or at least his.  He was trying different turns, using different muscle groups, etc. etc. and has hit on what works - for now.  His incision is on his right side, and if he keeps his right foot off the ground (when getting in and out of chairs) then he is forced to use his left side, and that causes the least amount of pain.  Eureka!

There's not much else to report.  I imagine we'll have a quiet week.  I'm going out to do some yard work, as I haven't been able to do any since my toe surgery.  Today is the first time in almost 5 weeks I've been able to wear a shoe!  Dave is resting comfortably in his fairly new recliner.  I had started looking for one last year when Dave's chemo started, and it took me until April to find one I could live with.  It's had a lot of good use in the last 6 months.

I will update on Thursday, after Dave's appointment with his oncologist.  Until then, please assume Dave is getting better every day.  He's eating healthy delicious meals made by loving hands and getting all your good wishes, prayers and jokes.  And oh by the way, it hurts him to laugh, so he specifically asked that PH not come over.  You know who you are.

SURGERY DONE

Oh poor Dave.  He is in so much pain.  His meds have finally started kicking in (after 40 minutes) but he's still miserable.  His bandage is about 6 inches long - of course I haven't seen the incision and staples (yes staples!) yet.  The bandage will come off in two days and I am already preparing myself.

The incision is on the right side of his lower abdomen.  For those who want details: the testes and cord are essentially pulled out through this incision.  The scrotum remains.

Dave was all checked in by 10:45, prepped (gown, gripper socks, warm blanket, IV) by 11:30, and it was off to the OR before noon.  I was finally called back to Recovery at 1:30. They had been trying to get Dave to be awake enough to sit or stand and pee, but he was having none of it.  In fact, he was still in that barely-conscious state, and moaning with pain.  It was all I could do to not collapse and weep.  

It's one thing to have pain yourself, it's another to see someone you love in pain.

The nurse couldn't give him more relief via the IV until he was awake enough to be able to take deep breaths.  When she felt he could, she gave him more pain medication, but his heart rate and oxygen started falling so we were trying to keep him awake and breathing. God bless medical personnel.  How you do you watch someone go through this and not melt into a crying mess?  I DID hold it together, though.  I thought I was going to faint at one point, but I sat down, ate some peanut butter crackers, and kept reminding myself my job is to keep Dave awake.

This was pretty terrifying for me, but you medical people reading this may think this is pretty routine (?).  Nursing is not my calling.

Of course Dave eventually came around enough to get dressed - with help - and into the wheelchair to be discharged.  Unfortunately, every little movement that affects the muscles on the right side of his body hurts him.  We stopped by the pharmacy to pick up his pain pills and antibiotic then came home.  He ate a peanut butter sandwich, took his meds, and gingerly, and with a few struggles, finally got settled in his recliner.  He didn't even take off his jacket, though I suggested a sweater might be more comfortable.

I asked the doctor how long it would be before we get the pathology results.  The lab they use is in SC, but he said he'd try to rush it and hopefully it will be 3 or 4 days.  He will call as soon as he gets the report.  And now we wait.

The doc had a last piece of wisdom to impart->

Dave has an appointment with his Savannah oncologist Thursday, which was originally set up as his normal 3-month checkup.  He will keep that appointment although we realize we may not yet know what Dave's latest mass was.  His followup with the urologist is next Monday.

Thanks for all the calls, emails, texts and prayers.  We get them and we feel that we're in good hands.

SURGERY SCHEDULED

Dave had an appointment at Urological Associates today, getting his pre-surgical work done.  He had blood drawn, a chest x-ray, an EKG, a urine sample (really?  his third one in a week) and a thorough review of his medical history.  All this was done in preparation for his radical inguinal orchiectomy (I think I'm ready for my debut on ER).  It is called "radical" because the entire spermatic cord is removed as well as the testicle itself, and "inguinal" because the testicle is removed through a small cut (incision) made in the lower abdomen (groin).

We will be checking in at 11 AM this coming Monday, 11/10/14.  The surgery will be in the Urological Associates' outpatient clinic.  He is scheduled to go under the knife at 12 PM  and should be finished in less than an hour.  We'll go home that afternoon, as soon as Dave is awake and coherent.

I know the tumor will be sent for a pathological analysis, but I don't know how long that will take.  Dave will probably be on pain medication for a short while.  He should have a full recovery in 2-4 weeks.

\I certainly hope he will be up and ready to dance in 12 days, as we are looking forward to attending Libbie's wedding and reception.  And, Dave bought three, yes three! pairs of shoes today.  An historic day.  We were at the outlets in Bluffton, SC, and there were scads of Veteran's Day sales.  Who knew that's how we celebrate Veteran's Day (weekend)?  Oh well.  Dave, who hates to shop, found three pairs of Cole Haan shoes, so now he is ready for dancing as soon as he heals.

I will get back to this blog next week to let you know how the surgery goes.  In the meantime, please remember to be thankful Dave is looking forward to being well heeled at Libbie and Steve's wedding, and we could use some help in our wishes that this is just a FREAK cancer and not metastatic melanoma.  Thanks.

THE HIGHS AND LOWS OF A MYSTERY

We've had some highs and lows in the last two weeks.  Dave had his annual checkup with our internist on Monday 10/20, and all his standard vitals looked great.  Five days later, Dave felt some discomfort in his groin and at first considered his pants were too tight.  By the next day, Saturday, he had some swelling and pain radiating up toward his hip.  He resolved to call the internist first thing Monday.  Sunday I told Molly about this turn of events; Chad talked to Dave then immediately spoke to a urologist on call who promised to get him in to see a doctor asap.  Dave got in Monday morning.

By then, one of Dave's testicles was swollen to 3 times its normal size, and all he could think about was some old National Geographic pictures of guys with elephantiasis of the testicles carrying their 'private parts' around in wheelbarrows.  Not so private.

The antibiotic Dave was given provided almost instant relief, but with Dave's history, the urologist scheduled an ultrasound just to be sure there was nothing going on besides the infection and ordered a blood test to check for markers that would indicate a couple of types of testicular cancer.  Much to our dismay, the next day's ultrasound showed a small mass "suspicious for malignancy."  This low was followed by a high when the blood test was negative for the markers they were looking for.  So what is this mass?

Dave had a PET scan yesterday 11/4.  We have the preliminary results - the bad news was the mass showed activity consistent with cancer, the good news was that there were no other signs of cancer in his body.  We were very concerned that if this were metastatic melanoma, and traveled to his testicle, where else had it traveled?  So we are relieved, but know this is the preliminary review and the radiologist will be going over the results with a fine tooth comb.

Next steps - Dave has been in touch with his MD Anderson surgeon who agrees surgery is necessary.  He just spoke with his urologist this morning;  the surgery will occur early next week to get rid of the offending testicle (no worries, we've been told one testicle provides more than enough testosterone so he still gets to be Mr. Howell).  We need to find out what kind of cancer it is, as it may or may not be related to his melanoma.  It's a small chance of not being related, but however small, we'll take it.

And I'm back to blogging to keep you informed.  I'll post again when Dave's surgery is scheduled, and in the meantime, we would appreciate you joining us in our gratitude for the fabulous support we've received, our smart and proactive doctors (especially Chad) and we'd also appreciate your prayers if you pray and your positive energy otherwise.  And now, I need to find one of these t-shirts for Dave.  I wonder if they could drop the last 's'.  Joke.

EXCELLENT RESULTS FROM MDA

Dave had a CT scan and blood work done yesterday, 7/30, and discussions with his MD Anderson doctors today.  To cut to the chase, everything looks great, including Dave.  All the nurses, PAs and the doctors commented on how well he looks.  Gone is the grey-skinned, frail man that slept all day and lost a lot of his hair.  One nurse ran her fingers through his hair, saying how lucky he was to have such a full head of hair.  If you can't tell from the pictures, he is a lot grayer than before, but it looks good on him.  (Men are so lucky that way!!)

Dave checking in at MD Anderson

His melanoma specialist, Dr. Bedikian, is retiring next month, so if Dave has any more issues, he will be assigned a new medical doctor.  As long as he doesn't have any issues, he will continue to see his surgeon, Dr. Ross, who will become his primary contact. We were happy with that, as we like Dr. Ross a lot, and he was the one who suggested Dave forego the Isolated Limb Perfusion (ILP), and instead have a lymphadenectomy.  It turned out to be exactly the right thing to do, since melanoma cells were then found in a lymph node under Dave's collarbone.  If he had decided to do the ILP, the metastasized melanoma cells may not have been found, and the results could have been very different.  We are very happy to continue seeing Dr. Ross.

Dave in his new glasses

Dave is feeling so much better than he was in early April when he had his 'event' as he calls it.  It was a seizure-like problem, and no cause was found. He has been walking several miles a few times a week, he has gotten back to kayaking a few hours at a time, and is talking about starting his swimming again.  He still gets tired after any exertion, and it takes him longer to recover, but I can see improvements week by week.

We've had a really good time while here in Houston.  We're staying at Jon and David's beautiful home, and taking power walks in the mornings.  Last weekend Dave went shooting with his brother and nephew, on Monday we shopped for wedding table centerpieces for Libbie, Tuesday we celebrated Jon's 60th birthday, Mom is here from Charleston for the week so we've been antiquing, and tonight we are hosting our siblings, in-laws and Mom for a dinner at a little French restaurant, Bistro Provence.  We celebrated our anniversary there last year, and decided we want to go again.  Also, Jon, Mom, Dave and I bought new eyeglasses at a great little boutique. We all had to have Jon's okay before we purchased, though.





So Cheers!  We are so thankful.

DECISION TO STOP CHEMO

Dave's seizure on April 6th was very scary, and a turning point in his treatment plan. Although there was absolutely no evidence of cause for (or, thankfully of any damage from) the seizure, we can't help but attribute it to either his drugs or maybe even the fact that his body is just plain worn down.  The x-ray, CT scan, EKG, EEG, MRI, MRA, ultrasound, and echo-cardiogram he had two weekends ago could not identify any problem, and a stroke was ruled out.  His oncologist, Dr. S. told him to stop injecting his Intron for at least a week, and to make an appointment at his office.

That office visit was yesterday, April 17, and I was out of town.  I didn't get to hear the discussion, but the bottom line is Dave decided to forego any further treatment, while he has no evidence of melanoma in his body.  

Dave had contacted his MD Anderson oncologist, via email, and had a phone conversation with the nurse practitioner.    They had no objection to Dave stopping the treatment, although they made it clear that they were not convinced that his drugs were the cause.

Dave was on a year-long treatment plan, as you may remember.  The first month (last October) he had four weeks of daily (Mon.-Fri.) intravenous treatments.  In November he started a three-times-a-week injection of Intron.  By April 6th, he had had 6 months of the 12-month protocol.  Unfortunately, there are no studies that show the effectiveness of a 4-, 6-, or 8-month treatment as compared to the 12-month standard.  Dr. S. said early on that over 50% of patients cannot even finish the first month, and that completing the first month seems to have to most benefit.  

Dr. S. advised Dave to continue; his reasoning based primarily on the fact that an Intron-related seizure is such a tiny risk.  And we don't know that it was related to the drugs at all. However, the person that experienced the seizure, Dave, didn't like even the tiniest of risk of it happening again.  Dr. S. was in agreement with Dave's decision.  It wasn't his preferred option, but he certainly understood Dave's position and had no issue with Dave's decision. Backing up a little, I should say Dave went into the discussion fairly certain he wanted to stop, but was open to a compelling argument to continue.  The studies just are not available to compare 6 months of treatment to the benefits of 12 months.  We will see.

In the two weeks Dave has been off his drugs, his color is better and he's gained a few pounds.  Compared to a month ago, his white blood cell count and GRA has improved (though they are both still low), and his platelets are back in the normal range.  Such an improvement already!

Dave will be getting checkups with Dr. S. and at MD Anderson every 3 months for a while, alternating between offices.  I appreciate everyone keeping up with this blog, but since the postings now may be few and far between, I will also post a note on Facebook when I am updating.  

Melanoma has been a nightmare, but having such great support from our family, friends and medical professionals has really made us grateful.  More than I can express, more than you know.

OVERNIGHT IN THE HOSPITAL

We just came home after Dave's 28 hours in Memorial Hospital.  We were at our Parish Weekend in Waverly, GA (near the GA-FL border) when, during brunch, Dave had an episode that looked like a seizure.  We were having brunch in the camp dining room with several parishioners.   I asked Dave, just as he was setting down his plate of food, if he would bring me coffee when he got his.  He went to get coffees.  With two cups in his hands, he got dizzy, then was unable to control his movements, and was unable to ask for help.  I was not watching him, so we don't know exactly what happened, but someone was immediately by his side (our priest's wife, we think, who is a nurse) and suggested he put down the coffee.  When our priest came over to me to tell me Dave was having trouble, I turned and saw a couple of people helping Dave walk to a chair.  His hands, arms and legs were spastically moving and he had trouble walking.  He sat down, someone got him water, and as he sat and drank his water, the 'seizure' (which is what it looked like to me) passed and his jerky movements stopped.  Someone brought his plate of food to him, he ate a few bites, and someone asked if he was feeling better.  He was trying to say he probably should eat the healthy food (eggs) instead of the sweet food (cinnamon roll) but he couldn't quite find the words.  In the meantime (between getting him in the chair and while he was eating) I ran back to our room to get my phone, and called Chad.  Chad said to call 911 but as we were talking I got back to the dining room and Dave seemed much better.  He was eating and talking, slowly but clearly.  I really didn't want to go to a hospital in Waverly, GA, so told Chad that unless Dave has another episode, I wanted to drive back to Savannah where Dave has his doctors. Chad told me I was taking a risk, but to me, it was a risk worth taking.  I knew that if Dave were to have a problem, I would pull off the road and call 911.  People stayed with Dave while I ran back to the room to throw all our things in the car, gathered up Coleman from his playtime with his buddy, drove the car to the dining room to pick up Dave, and we were on our way.  It was pouring rain all the way.  Dave leaned back and closed his eyes, Coleman concentrated on his DS, and I white-knuckled it through the rain and thought about the possibilities - melanoma in his brain?  a random TIA?  a stroke?  It was a long 90 minutes to Memorial.  Frightening!!

We went straight to the ER.  Molly had called a friend of hers who met us there to pick up Coleman.  Oh - I didn't mention Molly, Chad, Chase and a friend were in SC at their beach house, but packed up and were on their way home to help out.  Chad had called ahead to let the ER know we were coming.  Within a few minutes, Dave was being checked over by an ER doc.

He had a chest X-ray, and EKG, head CT scan and blood work, and an IV port inserted (though it was never used).  Chad came to Memorial to see him and talk to the ER doc.  After several hours, knowing it could take several more hours to get a room, I went home to change clothes, get pajamas and clean clothes for Dave, dinner for the two of us, and I needed to drop off Coleman's clothes and school backpack.  Our internist's partner, who was on call, called me to say he had spoken to Dave and reviewed the test results.  He ordered a few more tests, and said our internist would see him on rounds in the morning.  Back to the hospital for me, and surprise, Dave had been assigned a room in the Endovascular Procedure Unit (EPU).  When I arrived, he was off getting his MRI.  I waited about another 1 ½ hrs. before he came back.  By then it was after 9 PM.  Dave ate his dinner and I went home.

At 2 AM he had an ultrasound, and at some point, I don't know when, he had an MRA.  I had a very restless night, as you can imagine, not getting to sleep until about 1:30, and at that point I chugged some NyQuill, as my head was stuffed up and my throat hurt.  I had about 5 hours of sleep, then finally got out of bed at 7.   I felt like poop - like I had a huge head cold.  Hoping it's just allergies, I swallowed some Benedryl and Airborne.  Molly called to tell me Chad had already seen Dave, he was feeling well, and all the tests so far had come back negative for indications of a stroke.

I went to the hospital, and Dave was fairly cheerful.  He had seen Chad and our internist. We knew his oncologist and a neurologist would be coming by, and he still had to get an echo cardiogram.  After the neurologist visited, he ordered an EEG to rule out a propensity for further seizures, suggested that Dave take a low dose aspirin every day, and although it was prescribed in the morning, there was no need to continue Lipitor, as Dave's cholesterol counts were good.

After the X-ray, CT scan and EKG, the 'working theory' was that the seizure was a TIA, possibly a side effect of the chemo drug Dave is taking 3 times a week.  Dave's oncologist, Dr. S., came about 3:30 pm today, after the neurologist, and the echo cardiogram, and he was not willing to say that was the case.  He said this type of episode was atypical and had a frequency of less than 1% on patients taking interferon.  (By the way, he has already spoken to Chad, knew what was going on with Dave, and had done some research before seeing us.)

Dr. S. said to skip this week's interferon injections, and make an office visit next week.  He was recommending staying on interferon, but as he said to us, you are the decision maker.  I told him after such a scary event, my inclination is for Dave to get off interferon, even if it's just a 1% chance of having a seizure or TIA.

Nice wrap - and pony tail (26 electrode wires)

The tech came in to do the EEG, and when he was finished the charge nurse came to say the results would not be back for a while and Dave may need to spend another night.  We told her we REALLY wanted to go home, especially since Dave was feeling fine and every single test had been negative for symptoms of another problem, and there were no signs of damage.  She left to call our internist, and came back with the good news that he was discharging Dave.  Hooray!

Getting highlights?  No, an EEG.

We drove into our driveway just after 5 pm.  It's been a scary time, but ALL the tests seem to indicate Dave is a healthy guy, the 'episode' has no explanation, and all he has to do is be extra-vigilant for the next week.  We won't go far from home!

Since this episode happened in a dining room full of our parish members, we know we've had lots of prayers for Dave's good health, and we thank you all for your support.  We also had innumerable offers to help, as one friend put it, "for ANYTHING."  Molly, Chad and the boys cut their time at the beach short to come back to help.  The friends and family I contacted offered their best wishes and help.  We are so grateful.

CHECKUP 3/6/14

It's been a month since I've updated this blog, as it's been a month since Dave had a checkup.  The last one was in Houston at MD Anderson when all the indicators were peachy, and yesterday's results were just as good.  Last week Dave had a brain MRI and a whole body PET/CT scan.  Thankfully, Chad was able to read the radiology reports within 24 hours and told us everything looked good, so we didn't have to wait to get the 'official' review.

Yesterday's visit included blood work.  Dave's white blood cell count stayed steady at 2.3. His platelets improved from 149 to 171, but the GRA dropped from 1.4 to 1.0.  This is the infection-fighting part of his white blood cells, so as usual, we are careful to avoid any infection-carrying people - which means avoiding being in crowds!  Dave dropped 3 pounds since the last time he was weighed in this office, which makes a total loss of 19 pounds.

Overall, both Rosemary (NP) and Dr. S. were impressed with Dave's ability to tolerate his treatments and his great attitude.  They didn't think Dave had much hair loss, but we know differently!  He's lost a ton of hair, but it is growing back. He has lots of short little fuzzy new growth.  You may not be able to tell in this picture.  He's been working on our taxes, and his sister's, and I think maybe he's pulled some of the hair out himself.

Dave's progress is so steady, he isn't scheduled for another appointment for 6 weeks!  Then in August we'll be going back to Houston for another checkup at MD Anderson.  And since we don't think Dave is up for a traveling vacation this summer, we're already starting to plan one for 2015!  We want to take another river cruise and spend a few days in Paris (which is why this blog still has the Eiffel Tower photo - inspiration!).  Who wants to go?

CHECK UP DAY 2 @ MDA

Nothing but good news today.   Dave saw Dr. Ross, his oncological surgeon, after seeing
Dr. Ross' nurse and his PA.  Dave went through his issues with all of them, his fatigue, weakness, hair loss, skin rashes, and the occasional discomfort and pain at his surgery site. All of them, especially Dr. Ross, commented on how good he looks and how well he is doing. Today is a 'day-after' (a shot) so Dave really isn't feeling very well, and he was surprised and gratified at all the positive comments.

We received the results of the blood tests.  Dave's white blood cell count dropped from 2.9 to 2.3.  His platelets rose from 139 to 149 (back in the normal range).  MD Anderson's count of the neutrophils seems to be on a different scale from what we get from Dr. S. in Savannah, so I can't compare these numbers to what we usually see.  We know his liver enzymes were checked, and the PA said all the numbers look good for someone being on this treatment plan. We have the printout, so we will of course share the results with Dr. S.

Dr. Ross requested a new CT or PET scan when Dave gets back to Savannah, and then a return visit 6 months from now.  He told Dave to stay on the treatment plan, and Dr. S. did the right thing by reducing his dosage.  As long Dave doesn't find any new bumps, lumps or moles, he is free to not return, but Dave likes having that second opinion, and wants to stay in touch with Dr. Ross.

It's been a rainy day.  Before Dave's 1 PM appointment, we had an early lunch with Bobbie and Jeff.  Bobbie twisted my arm and we started with a glass of wine to go with our pizzas.  :-) How much cozier the restaurant seemed.  When it was time for Dave's appointment, we dropped off our car at the valet service, and were checking out 1 hour and 8 minutes later. MDA is efficient!  Then when we got back to Jon and David's, the sun came out.  Like I said, nothing but good news today.

CHECK UP DAY 1 @ MDA

Here we are in Houston for the first day of Dave's two-day check up schedule.  I know I'm repeating myself, but MD Anderson runs like clockwork.  We checked in at 9:30, Dave had 4 vials of blood drawn, a chest X-ray, then his visit with Dr. Bedikian, all on separate floors with different check-ins and waiting rooms and all crowded with people.  We checked out at 11 AM.  What a finely tuned and efficient business!

We don't have the results of the blood work, but Dr. Bedikian said the chest X-ray was negative for anything suspicious.  He gave Dave a whole body exam, listened to his lungs and heart, felt his lymph nodes, asked about his treatment and how he is responding, and said the adjustments to his treatment (the 50% dosage based on his counts) was appropriate and clearly his doctor in Savannah is doing the right thing.  He also told us today is his last day, as he is retiring.  He said if Dave feels he needs to see an MD Anderson oncologist in the future his nurse practitioner will give Dave a recommendation for a new doctor.  As far as Dr. Bedikian is concerned, there may not need to be any further check ups at MDA.  He did mention that Dr. Ross, the surgeon, may want to continue to see him, but there does not seem to be a reason to come to Houston unless another problem arises.

Dave will see Dr. Ross tomorrow and hopefully we'll have the results of his blood work.  So far so good!

1/23/14 CHECK-UP

I was under the impression Dave was seeing Dr. S. today, but instead we saw Rosemary,
the nurse practitioner.  Dave hasn't been to the office for two weeks, and Rosemary said it seemed like forever since we've seen her.  She's right; we've been to the office at least weekly since October!

The counts --
WBC rose from 2.5 to 2.9.  We're shooting for 4.1.
GRA stayed at 1.4.  We'd like to see 2.0
PLT dropped from 164 to 139, just one point below the target 140.

PLT, the platelets, help prevent infection, so as in the past, Dave has to be careful to avoid cuts when he shaves, slices veggies, or does anything with a knife or razor in his hand.

Dave and Rosemary spent most of the visit talking about his fatigue.  Rosemary had several suggestions: Do some walking every day, not just every other day when he feels better.  Limit naps to about 30 minutes; no more than an hour.  Don't lie down in bed unless you plan to sleep - no more lying in bed while on the iPad or watching TV.  Stay hydrated.

When Rosemary did the physical check up, listening to his lungs and heart (sounded good) then palpated the liver, she thought his liver may be slightly swollen.  She asked about Dave's Tylenol intake and suggested he cut back even more.  She asked about any symptoms of liver problems he may have, but he did not seem to have any issues, and his liver area was not tender.

Dave is still losing his hair, but not as rapidly as he was in the last two weeks.  He also seems to be much grayer.  Still a handsome devil, though.

Yipee!  Houston here we come.

We leave for Houston a week from today, and Dave has appointments at MD Anderson on Feb. 2nd and 3rd. We assume they will do a complete work up; we'll know more after that visit.

Between these doctor visits, Dave has still felt like being social, in spite of his fatigue. We made a very short (too short) trip to Amelia Island with Mom to see my cousin Anne and her husband Jeff.  We celebrated my birthday (several times!) and Molly's 40th last night. Molly's birthday is Sunday, but she and her family will be in Costa Rica, so we had an early celebration. We've been to a few movies, getting ready for the Oscars.  We have to have our opinions on the winners, you know.  Now we're looking forward to seeing our brothers and their families next weekend in Houston!

MIXED RESULTS

Dave had his first blood work of 2014 yesterday, with mixed results.
WBC dropped from 3.1 to 2.5
GRA dropped from 1.6 to 1.4
Platelets increased from 133 to 164.

Although his numbers are still bouncing around, and not in the 'normal' range we desire, they are not low enough to sound the alarm.  For the first time, he is going to be able to go two weeks between blood tests!

You may remember I've written Dave has had a rash on his chest.  It is mild, only occasionally itchy and also showed up on one of his temples.  He saw the dermatologist and he's been using a medicinal cream twice a day.  The rash has mostly cleared up, but once in a while a really bright red spot appears (which is why he decided to see a dermatologist).  The doctor took a sample of one bright red spot and it turned out to be an inflamed seborrheic keratosis.  WebMD.com says, "Seborrheic keratoses are noncancerous (benign) skin growths that some people develop as they age. They often appear on the back or chest, but can occur on any part of the body. Seborrheic keratoses grow slowly, in groups or singly. Most people will develop at least one seborrheic keratosis during their lifetime."

The other change we've noticed is Dave is losing his hair.  It has been coming out really quickly.  He had his hair trimmed today and it's amazing how different he looks just in this last week.  This is not a gradual change, it seems as though it has happened just recently.  I wonder if his body is simply saturated with drugs and rebelling.  Thank goodness Dave is not the kind of guy that would worry about hair loss and try a Trump comb-over or an Andre Agassi wig.

HAPPY NEW YEAR - 2014

Here it is, a brand-spanking new year, and we have high hopes for a healthy and happy 2014. We celebrated New Year's Eve very quietly - we went out for a Chinese dinner (an old tradition) then watched The Perfect Host via Netflix, in bed.  Dave had had a good walk during the day and took a long nap, and was able to make it through the movie without falling asleep. Even if he had fallen asleep, my laughter would awakened him.  (Good movie - if you like David Hyde Pierce.)

Dave had his blood tested yesterday morning.  He had mixed results:
WBC went from 2.8 to 3.1 - good!
GRA went from 1.5 to 1.6 - good!
PLT went down from 162 to 133, not so good, as the trend has been steadily downward for the last several tests.

I haven't mentioned the platelets before, as Dave has always been within the normal range of 140-440, but now he's below where he should be.  Platelets help with blood clotting, so getting a cut would now be of more concern.  Rosemary said he's not in the Danger Zone, but we'll keep checking this number, as well.  Dave will get his blood tested again in a week.

12/29/13 at Libbie's in Hoschton, GA

We had a great trip to Atlanta, stopping to see Steve and Rita, Dale and Gina (and kids), Libbie and Mom, Kathy and Gary, Travis and Karen, and Jimmy and Diane.  Pictures will be posted on Facebook.  Dave managed by napping every day, but the good company and great fun went a long way to ending 2013 with fond memories.

Here's to good cheer for a New Year! Thanks to everyone for all the love and support you've given us in 2013, and we look forward to an even better 2014.