Daley's Dailey News
  

November 2011

11/01/11 Tuesday 9:00 AM We are trying to fool our minds to believe we are on vacation.  So I will post photos from past vacations!  Never in the past did I wish my vacation was over on the first day!!  Calm down Rich, we still have over a week to wait for news from MUSC.

Stan and Cindy Rainey bought dinner and brought their laptop with them!  They use it when they are in OH over the summer months!  They loaned it to me for the next 6 months!  This assures that I will be able to upload Di's status when we are in Charleston.  It saves untold hours on the phone and assures all will get the same information.  I plan on publishing news regularly -- probably in the late afternoon. 

11/01/11 Tuesday 4:30 PM  MUSC just called, treatment will begin on Monday 11/7. 

11/01/11 Tuesday 9:00 AM  We must wait until Thursday to hear if we get into the Hope Lodge.  If not, I'll make reservations for M thru Thur at a nearby suite hotel.  We'll come home Fri PM for the weekend of 11/11-12-13 and head back to Charleston on Monday 11/14.  7 weeks in total.  The way I count it, therapy should be finished 12/23, just in time for Christmas.  We'll place a loblolly spring on the fireplace in hopes that Cinder Cloud will visit on the 25th!

11/03/11 Thursday 5:00 PM  We rec'd a call and we are in the Hope Lodge!  This facility is provided for us folks far away.  The rooms are small, twin beds, facilities, chairs, TV.  Community rooms for sitting, large TV, game tables, easy chairs.  All residents have areas for food, frig, stove, coffee, etc.  Local charities provide food MTWT or you can prepare your own.  Our plan is to leave after radiation on Friday and head back early Monday AM.  Chemo and radiation are set for Monday 11/7.  Di will hopefully be able to arrange early morning radiation so we can be home early Fridays.

11/06/11 Sunday 8:00 AM  We will be in Charleston at 9 AM Monday.  Di will have a blood test; then off to chemo; then radiation.  We expect the day to be filled with activity.  Once Di is in the infusion room, I will head to Hope Lodge.  After signing in and unloading 5 days of items (clothing, blankets, pillows, food, water, etc.), I will return to my home away from home -- The Library in Hollings Cancer Center (part of MUSC).  The library is a mere 10 steps from the waiting room and far more comfortable.

Until we know more about what Di's days will be like, my guess a visitation will be as follows:

No visitors on Monday or Tuesday.  Wednesday and Thursday are open but call or email me if you would like to come to Charleston.  Plan on other activities in case Di isn't up to a short visit. 

We will arrive on HHI Friday afternoon, Sat, Sun and head back on Mondays.  Be mindful of your health if you visit, Di's immune system will lower as time passes.   

So many have said they would like to visit.  The "Dilemma" is we have 42 immediate family members,  33 can be here in a days drive, 11 are 2 hours away.  Adding BH and HHI friends presents quite a challenge! 

Email and TXT messages are delivered instantaneously!  Just a quick word or two would be fantastic!  Send cards to HHI address - mail will be retrieved on Friday afternoons.

The Warden

11/13/11 Sunday 9:00 AM Di is up at 8 AM, 10 hours of good rest.  Rating 6 right now.  We'll see how the day develops. About the only thing on my to do list is to buy a paper, watch TV and read.  Packing won't take long for all our clothes are clean and hanging at the Lodge.  I'll add a bit this evening.  We will head to Charleston early Monday AM to be at MUSC by 10 AM.

Later.....

11/19/11 Saturday 7:45 AM  Home at last!  Yesterday rated 8, today may even be better.  Our spirits just climb as we come on the island.  Di said a few minutes ago, "This place is beautiful, after being gone for a while you forget how beautiful it is!"  So Dorothy was right ....there is no place like home!

11/20/11 Sunday 10 AM  Rating 8 yesterday and starting out the same today.  The pain in Di's mouth has increased as the radiation does its thing.  She says food tastes like iron and often is like something out of a swamp.   She will supplement her diet with Ensure.  We are experimenting with banana, ice and Ensure in the blender.   This is not unusual.  Getting nourishment is vital.

11/23/11 Wednesday 7:00 PM  Rate today is a low 5.  I keep thinking it will improve but NADA.  We were up at 5:30 AM; radiation at 6:30 AM; Doc at 8 AM.  The progress report is great news.  The tumor has shrunk significantly.  Di's big challenge is the side affects.  Her gums are very sore.  She is talking with a rasp.  Besides being tired (she did take an hour nap when we got home), the taste of food is repelling.  When we got home around noon, she managed to eat a hardboiled egg, small amount of chicken and a yogurt.  Tonight we had steak, baked potato and peas.  Although she ate pretty well, it took effort on every bite.  And the Doc says it will intensify as the weeks pass.  The goal is chemo 7 - 3 = 4 to go; radiation 35 - 12 = 23 to go.  She has better instructions on applying Fluoride to her teeth at night that should reduce the pain.  She has another mouth wash that might help.  All I can say is the fight is nasty but we are making positive strides.  It is just discouraging when you know things will deteriorate physically as we go forward. 

11/24/11 Thursday 7:00 AM  When we retired last night Di said it was the worst day since she started therapy.  Mouth and throat hurt.  First thing she did was take a pain pill this morning.  Thanksgiving will have a different slant for us.  Thankful the meds are working but far from being in the spirit for a party.  Maybe things will change later in the day.  One thing for sure, it never stays the same.

11/25/11 Friday 7:00 AM  Yesterday's rating #3.  The radiation affects are in full force.  The last therapy of the day is Fluoride treatment.  It is poured into trays.  They look like plastic mouth guards.  It coats the teeth to prevent decay.  But some spills out over the gums and causes extreme pain.  Even when followed by pain meds and gargle the extreme pain continues for 15 minutes or more.  Di's quote of the day "They are trying to kill me!"  Her voice is to weak to chat on the phone.  email is the best way to communicate.  If  you want to chat, call my cell.

11/26/11 Saturday 7:00 AM  Friday's rating #4.  Di seems to be doing better this morning.  I guess # 5 and will post again after OSU and Michigan meet.  Her BP was low and indicates dehydration.  Today's goal is 5 bottles of water.  I think I detect more strength in her voice.

 11/29/11 Tuesday 5:00 PM  Today's rate #7. Radiation was backed up a bit, by 10:45 PM we were on our way to the Citadel Mall. Di did some shopping while I sat and read. She saw a "5 Guys and Fries" on the way and asked to go there for lunch. She ordered a burger and fries. I couldn't believe how she ate! Said the awful taste was gone. In fact the food had little taste. She nearly ate the entire lunch. On the way out of COSTCO she wanted a ice-cream bar. "Not as good as the one I had in Kauai". I am delighted with her intake. She has lost 8 pounds and we need all the calories she can eat. Tired she is. We got back to the room at 2 PM and she has been sleeping ever since. I pretty much shadow her and it is necessary. She is unstable even for a short walk. We got a close parking permit today. When the temp is 46 it will help to drive her over to Hollings.