01/01/2012 Sunday 8:30 AM  Di would have deserved an #8 rating if the evening would have been better.  I'll take the improvements though.  She was clear headed, often sat up, both on the front steps and in the LR.  Her intake of food at dinner was poor.  I think it lead to nausea in the evening.  11:00 to 11:30 PM was not good.

01/04/12 Wednesday 7:00 PM  BT at 10:30 AM, lunch, then Dr. Chemo.  One glaring deficiency on the BT, anemia!  Dr. filled out orders for 2 blood doses.  Local Dr. GP has scheduled the transfusion for Friday here at HHH.  They all say it will make a huge difference and the lack there of is the reason for low energy and light headed feeling.  This morning, Di crawled from the BR to the steps and slid down on her rear, then walked a few yards to the car with my help.  She was in a wheelchair the entire day.  Dr. Chemo also increased her pain meds from twice a day to three times.  There is no doubt the sores are shrinking.  I expect Friday to be an 8+ day. 

Di was awake the entire trip.  She just now went to bed.  We have an appointment with our Dr. GP at 2:30 PM Thursday and will find out the details of the transfusion.  At least we won't have to go to Charleston for it.

Kris is coming over from Atlanta.  I'll have plenty of relief for a few days.

Later..... 

01/07/12 Saturday 7:30 AM  Di was cold when she got home at 3:30 PM.  Kris pulled up the comforter and came in the living room.  Mark and Kathy arrived at 6 PM and things started to heat up.  And it was Di that heated the most.  We took her temp and 1.17.  Instructions on the sheet we received from HHH has "fever call doctor".   Dr GP said it was likely caused by the transfusion.  Monitor and assume it will go away.  Or in layman's terms, take an apple and keep the doctor away. 

She also seemed to be in LaLa Land.  We were all trying to out guess each other on the next step.  At 11 PM, shortly after Pfeils left, Di called for help.  Kris and I dashed into the BR and she was taking off clothes!  The fever broke.  Back to bed she went and I joined her.  In less than a half hour up she rose...I am sweating again.  She did fine until 7 AM. 

So we thought we had one issue when in fact we had 2!  No doubt the transfusion was the cause for the fever.  The LaLa Land visit was caused by the pain drug.  Dr. Chemo advised taking one every 8 hours (it had been 2 times a day).  No doubt about it, she was not in pain but was in LaLa land -- i.e. -- had a reaction to the quantity of pain drug.

One thing at a time would be a lot easier!  This morning she took one oxycontin.  No doubt about it, she needs some pain killer but not too much or off she goes to LaLa!

Di has eaten her bowl of Cream of wheat.  I tried making it with milk instead of water.  NADA.  So I ate that first bowl while I made her water based CoW! 

I pray she is over the B transfusion issue and we are ready for another day!

01/09/12/ Monday 7:45 AM  Yesterday a #6, today starting out #7+.  Anyone that has been on strong pain killers knows you must quit sometime.  It is the patients decision -- is the pain worse than the side affects of the pain killer.  Yesterday was that day for Di.  I counted 9 vials of drugs in the trash this morning.  And I know she is out of the "tunnel", soon to be feeling much better.  That does not mean the healing is complete by any means.  She is far better than Friday!  Her throat and mouth have eased a little.  She is aggressively approaching eating and drinking.  Water NADA, Gatorade instead.  Grilled cheese sandwich instead of CoW!  She is far more alert.  If she can stays awake today (slept 14 hours yesterday) She just may rate #8.

Her voice is still an issue.  Talking on the phone is a 2 minute experience, then she hands the phone to me.  So for the next week, cards and email are wonderful.  Visits and conversation will have to be very short.  We will make a decision on Tuesday to cancel or go to Charleston depending on how Di is doing. 

Later........

01/10/12 Tuesday 7:00 AM  Rating 7 ++.  It was a very emotional morning for Di.  Part of the issue was still coming off the pain drug.  Also, Di feels pressure to attend a very important event on Saturday.  How could she be ready?  Her nails need attention.  She hasn't been to the beauty shop in 6 weeks.  Tomorrow's Dr. Chemo appointment, etc., etc.!  Although several of us tried to ease her concerns, we were not successful.

In the afternoon she seemed better.  I know the visit to Dr. Chemo is necessary.  A new BT will confirm the need for an additional blood transfusion and/or infusion of water/mag/potasium.  At this point we must know the status of her immune system.  So far I have limited all but a few visitors.  It is imperative that she avoids a common cold.  Just the thought of catching the flu petrifies me!

The next huge step is for Di to eat better/more.  I still doubt she takes in more than 800 calories in a day.  I won't give her a rating above 7++ until she eats better.  CoW=120 calories.  Gatorade=electrolytes.  Ensure=250 calories with nutrients (recommended 8 a day, Di seldom drinks more than 2).

01/10/12 Tuesday 7:30 PM  We will leave tomorrow about 6:15 AM.  BT is first at 8:30 AM, Dr. Chemo at 9:30 AM.  Di did fair today.  Pretty much a repeat of yesterday.  Still fighting taste and pain.  Will post late tomorrow afternoon if all goes well. 

01/11/12/ Wednesday 2:40 PM  Dis rating today #7.  We left at 6:15 AM.  BT completed by 9 AM and Dr. Chemo met with us at 9:45 AM.  BT results showed improvement.  Hydration OK, Magnesium just over the minimum, potassium OK, kidneys OK, thyroid OK, liver OK.  Her blood level is under normal.  Last time she had about 50% of normal, this time 85%.  Dr. cautioned not to mingle in public gatherings.  It's OK for a lunch or dinner at small table (especially if they serve CoW!).  We specifically asked if it would be OK to go to large event this weekend.  He hesitated like "didn't you hear what I just said?".  Then he said he would NOT recommend a large gathering.  With a compromised immune system it would be high risk, one we should avoid.

To the friends that have asked if we are ready for visitors, let's wait 10 days.  We have waited this long, no sense in risking the possible exposure to a bug.  We are to monitor her temp daily.  If she says she feels cold, take her temp.  If she starts a fever 102+ head to ER for it will take IV therapy, not a pill to combat any disease.  Perhaps my paranoia is not unfounded.

Di is sleeping now.  I must wake her at 3:30 PM for a bottle of Ensure.  Maybe I can interest her in pancakes!  I continue to try to find another food.  So far all ideas have failed.  Ensure, Gatorade and CoW are it!

01/12/12 Thursday 5:00 PM  A special Carnation Breakfast drink that has 560 calories and plenty of other nutrients was given to me by the MUSC nurses.  Di drank the complimentary bottle and said it was OK!  After visiting the 2 pharmacies and 2 grocery stores on the Island, I struck out.  I sent an email to a team of folks at BH to see if they would check the larger stores, i.e. Kroger's, Harris Teeter, Super Wal-Mart, etc.....  Bill and Gail Reddersen found it!!!  If all goes well, Burkes Pharmacy will have it tomorrow.  If Di will drink 4 per day it will be equal to 9 Ensure.  4 is a reachable number.

Di's rating is still a #7.  Until she consumes 1500+ calories per day she will continue to lose weight.  Eating is her big challenge. The Docs say she is right on course.  Soon the pain will recede and then she will be able to eat solid foods.  We are taking a step at a time, soon they will add up and I am confident we are in the final weeks of her recovery.

01/13/12 Friday 6:30 AM   Gail located and ordered a case of Carnation 560!  Before this days end, we should have plenty!  Now all we need is for Di to drink it.  She did drink a sample and said it was quite good!  If she will drink 4 of these per day (the equivalent of 9 Ensure), she will be on the way to far better strength.  If we can get her immune system up the equivalent of 2 more units of blood, she will be able to enter the world of people once again. 

01/14/12 Saturday 8:30 AM  Turns out the Carnation 250 was all that Burkes could order.  I will turn to the Internet and order online. 

Di is still #7.  She is far better than last Friday.  Last night Di made fettuccine.  She had her heart set on it.  One bite and she headed for the sink!  Another idea was unacceptable.  If she doesn't start eating she will soon slip backwards.  At times I think she is anorectic.  Even when she drinks it is a small sip.  We had a cup of hot chocolate last night.  I finished mine in 5 minutes.  One hour later Di had drunk 2/3, set it aside and said it was tepid.

She has good balance, mouth sores are receding, so the hunt continues to find a way for her to consume more calories, nutrients and electrolytes.  If you have any suggestions please send them my way.

01/15/12 Sunday 8:00 AM  Rating #8+.  We started Saturday by heading to McDonald's for pancakes --- one of Di's coveted breakfast specials.  Two bites and it was over!  So what's new, she so often craves something only to find it is horrid.  Back to the house we went.  CoW it was.  During the day she drank 3 Ensures; cream of shrimp soup (entire bowl) for lunch; beef stew (small piece of beef, carrots, potatoes) for dinner.  She was awake the entire day and had a good nights sleep!  She has just turned another corner! 

Taste is still the big issue.  The loving caregiver I am I told her, "if it gags you, spit it out; if it doesn't, swallow it!"  If she waits for things to taste good it may be months away!  She must add nutrition and I am delighted with her willingness to try new foods.  As quantity increases she will deserve a #9.  After the first swing of a golf club her rating will jump to #10.

01/16/12 Monday 8 AM  Di's rating #8.  She is working on a variety of food and doing OK.  Often she eats less than child so her quantity must increase.  But as she admits, the sores are leaving her mouth, throat is still very tender. Tylenol to the rescue.  Talking is still painful.  She points a lot, says one word and I must figure out the request!  The awful taste is lessening.  A day at a time seems to slow but we know of no way to quicken the healing! 

01/17/12 Tuesday 8:30 AM  Di continues at #8.  She had a tough start yesterday.  She took several pills - magnesium and potassium - among several everyday pills.  Then she ate CoW.  It didn't take long before nausea kicked in.  She knows better, food first then pills!  She felt crummy in the AM.  By  3 PM she said she wanted to try steak and baked potato.  Actually she did rather well on the spud, ate a small piece of steak too.  She had 3 ensures and finished a 12oz. bottle of Gatorade.  She is still weak, balance getting better.  We talked to Will and Jane for half an hour last night.  Di said hello and listened to the phone on speaker mode.  Talking is still uncomfortable.  She rebounded in the evening and this morning she is feeling much better.

I better dust off her golf clubs!  Shoot, I better dust mine off first!!

01/18/12 Wednesday 8:00 AM  Rating # 8.  When I left at 10 AM, Di was fine.  When I got home at 4:30 PM, Di said her mouth was killing her all afternoon.  Dr. Rich took a look inside and all I could see was white.  The soup she ate for lunch must have caused a reaction to her tongue.  She could not talk without discomfort.  Dinner was CoW again and a hot chocolate Ensure for a snack at 8 PM. 

01/19/12 Thursday 7:30 AM  Diane's a tired #7.  There are still some good signs.  She is eating and drinking better.  She has 3 Ensure in the day, ate soup with oyster crackers for lunch and Campbell's beans and bacon for dinner.  The doc warned us to stay in  touch if energy went down, it could mean a visit for a blood test and check specifically on the thyroid function.  I'll put the wheels in motion by 8:31 AM.

01/19/12 Thursday 4:15 PM  Once Di arose she ate CoW.  I was very concerned and thought her lack of energy was worthy of a call to MUSC.  Although she tried to make light of it, I called Kate for some RN advice.  In a matter of a few minutes I had decided on a plan of action.  I had a 9:30 AM APPT with our cardiologist (been delayed from last Nov).  Di thought she would be OK.  So I called our local GP and then called MUSC Dr. Chemo and tried to reach him before heading to Dr. Cardio.  Di said she had some chest discomfort and was a bit lightheaded.  As I left I told her the docs may be calling but I would be home in 45 minutes and to call me if she heard from either of them.

I told Dr. Cardio about Di and she said it was common to have the symptoms.  I had the situation in the hands of three docs.  When I got in the car to come home I dialed Diane.  She had Dr. Chemo and Dr. GP on the phone and they recommended she go to HHH ER to be certain it was not a heart attack.  So when I heard that I responded.  First I asked her to go get some aspirin and take it pronto.  Then I asked if she had continued left chest discomfort.  She said yes!

I then told her I was calling 911 and hung up.  I pulled into the drive when 911 ER appeared.  They quickly ran a EKG and determined the heart was irregular but doubted she was having a heart attack.  Off she went in the ER unit.  When I got there they had already had an IV started, blood test was under way, ER Dr. said he was confused with the comparison of last EKG 3 weeks ago vs. today’s. 

So far, the results of several tests show no evidence of a heart attack.  Dr. Cardio met me in the cafeteria and said she was 99% sure it was not a heart attack.  She ordered a CAT scan, results are not in yet (3:00 PM).  But since the CAT scan is preceded by an infusion of “glow stuff” that would help identify the heart, Di will spend the night at HHH so the “glow stuff” exits as it should.

Roy and Rosy are due at 4:40 PM (in 45 minutes). 

Di just called (4:00 PM) the results of the CAT scan show several blood clots on her lungs.  Therapy will be Coumadin to break the clots.  Dr. said she will be in the HHH until they are certain her clots are breaking up.  So I don’t know when she will be coming home.  The way the try to get you out of the hospital I assume before the weekend.

I am exhausted!  Glad R & R will be here to cheer me through this episode.  Dr. Cardio said the cause is chemo related.  The BEST scenario is a pill will cure the clots.  I have learned NEVER to ask the worst!  Let’s just pray for a speedy recovery!

Whew!!!!!!

1/20/12 Friday 7 AM  Just talked to Di this morning.  She had the usual experience, nurse in, nurse out, EKG @ midnight, EKG @ 6 AM.  Breakfast was in the hall.  She rested well.  Dr. Cardio will be by this AM.  I trust we are well past the ER moments and a pill -- Coumadin -- will soon break up the clots.  My guess is she will be on Coumadin for 6 months.

01/21/12 Saturday 8:00 AM  Friday was happily uneventful!!  I talked to Di this AM and she is to be released this AM.  I'll head over @ 8:15 AM

01/22/12 Sunday 7:30 AM  Released at 10 AM.  Stopped off prescriptions and were home by 11 AM.  Di started her day with far more energy than the afternoon.  I expect the same today.

01/22/12 Sunday 6:30 PM  Di has had a great day!  Seems like it has been forever but she was able to talk better and longer.  She just ate beef roast, carrots and potatoes.  She helped make the guest bed, did part of the wash.  All that without a nap!

Yyyyyiiiiiiiipppppiiiiiieeeeeeee & Yaaaahhhhooooooo!!

01/24/12 Tuesday 7:30 AM  Yesterday's rating # 8++.  Di was tired most of the day.  We walked around Sam's and on the way home I made a few stops.  Di sat in the car.  No movie, to tired was her reply.  The good news is her taste is returning, albeit slowly.  Last night she ate a fried egg, Canadian bacon and a slice of Daley bread.  Nourishment will  be relatative to quantity now.  Dr. GP called last night!  Just checking on her.  That is what I call a caring MD!!!

01/25/12 Wednesday 7:00 AM  Di's rate # 7 for yesterday.  She had considerable discomfort and was tired through out the day.  Dealing with the blood clots will be a many week challenge.  Today I will give her a last shot of potion to thin her blood.  She has been taking Coumadin for 7 days and her INR should be between 2 & 3.  I will take that test mid morning and call it in to Dr Cardio. 

Di called HHH and we will pick up a copy of the CT scan for her appointment Monday at MUSC. 

01/26/12 Thursday 7:00 AM  Wednesday's rating # 7 1/2, slightly better than Tuesday.  Being tired and not feeling well keep her from #8.  Di is eating far more table food.  She is still drinking 3 Ensure.  She is more active.  In fact, she prepared dinner last night - shrimp and rice - a favorite!  She also did the dishes and cleaned the kitchen!  It has been many weeks since she did these tasks.  Under doctors orders, she is moving about the house much more. 

Somehow she has strained a muscle in her back/neck.  Or could it be a blood clot?  Coumadin level is in the recommended zone.  She'll see Dr. Cardio at 10:30 AM today.

01/27/12 Friday 7:15 AM  Di's Thursday rating was #8.  Di pulled a muscle in her back and has been able to walk better than sit.  We made many stops yesterday and some she spent in the car with the seat in recline.  I sure hope her back pain leaves soon or the drive to Charleston on Monday will be challenging!  We picked up a copy of the CT scan to take along with us.   

01/28/12 Saturday 7:00 AM  Rating 8+++  Di had a great day yesterday with one exception.  A pulled neck muscle is still bothering her.  She is gaining on strength and overall it was a great day.  In the past we have tried making a smoothie - food and drink - in the blender and she did not like it.  Yesterday a friend told her to go to the "Smoothie" place next to Starbuck's.  She said many cancer patients go there -- they add proteins, fruit, and flavors to the drink.  $6.50 later Di had a 15 oz chocolate, banana, protein drink far better than ensure.  Besides that drink, she ate much more yesterday.  We will continue trying to find ways to get  nutrients in her diet!

01/29/12 Sunday 7:30 AM  Rating #9, Di had a marvelous Saturday.  She had a mild pain in her side in the AM and her neck ache is fleeting.  As soon as she exerted energy doing some tasks she stopped, said she needed to sit for awhile.  Once Kelly arrived there was no sitting!  They headed to shop and came home 2 hours later.  A brief rest, then off to shop more! 

I truly believe she has turned another big corner towards the finish line!

We will head to MUSC early Monday.  This will be the last post until Monday evening.....

01/30/12 Monday 7:30 PM  PT scan was NEGATIVE!!!!!!!  Doctors were smiling ---- "It is what it is" has been changed to "It was what it was"!!

Di's next appointment is 3/26.  Periodically for the next 5 years we will head to MUSC for a check up.  After that period of time they will declare the cancer gone. 

01/31/12 Tuesday 7:00 AM  Monday 1/30/12, the PT scan confirmed Diane is cancer free! 

The past week has been hell for Di.  Waiting for the days to pass to get the news had her on an emotional roller coaster.  After the cancer diagnosis in early October, she had 7 chemo infusions and 34 radiation zaps stretched over eight weeks.  I must find a new shirt that says “It was what it was!”

Diane will return to MUSC for a PET scan on 3/26th.  We have decided to close daily news on this page until March 27th.  You may assume she is making progress each week.  I will continue to post our activities on Daley’s Daily News.

Most importantly “Thank You”!!  Your cards, calls, prayers and the brilliant doctors and staff at MUSC have kicked Mr. Cancer’s ass over the moon!!