12/01/11 Thursday 2:15 PM  Rate today as #8. After radiation we went to the Market. After passing through the 4 sections a few times, you get to know where things are located. She was not a looker today, the trunk is full of "stuff". When we got home she had the shakes. She is lying down resting now. I have checked the meds and she is fine until 4 PM. I guess we'll never know why, i.e. is it chemo or radiation?

12/02/11 Friday 6:15 PM  Rate this day #5.  Low hydration caused a lightheaded experience this morning.  She is OK now and will increase water intake to 4 bottles of water per day. 

12/11/11 Sunday 6:00 AM  Yesterday's rating #5.  Di ate more, still had nausea and was very tired.  She wrapped Christmas presents, watched TV and took several naps.  She is up now, wants an egg for breakfast and a slice of Daley Bread.  I already know the Daley Bread will not be eaten.  She will try but it will taste like it just arrived from the barnyard.  It has for over a month!  We plan on another restful day before we head to MUSC at 8 AM Monday.  Her first stop is for a B test @10:45 AM.  They forward the results to the infusion center and if her Blood count is OK, she will get her 6th dose of chemo.  Then @ 3:00 PM radiation.   Even though it only takes 15 minutes it is always backed up on Mondays.  We should arrive at the Lodge by 4:00 PM.

12/11/11 Monday 2:45 PM  Blood test results - low blood pressure, magnesium & potassium. Nausea issue will be discussed with Dr. later this afternoon. Rate this afternoon #5 and improving. When she gets her dose of chemo they will add a potion including happy juice that will assist correcting the three issues. Her BP was 110/55. Way to low. She has been drinking lots of water too. 70 oz a day ought to be enough. She might drink more if taste wasn't repulsive. Sipping is all she can handle for gulping water cause acid reflux almost as fast as she swallows it. Weather is cold and wet. The rest of the week will be far better.

12/13/11 Tuesday 4:15 AM  Progress rating #6 today...new nausea medication and more magnesium have helped the trick. She ate cereal, Ensure, bowl of soup and a Frosty so far. She is also drinking 70 oz. fortified water. Although she is napping now, we went shopping after radiation at 10:20 AM. We stopped for a Wendy's Frosty on the way home. Tomorrow we may come back to the Lodge after radiation @ 10 AM and rest. I'd like to think a lunch at Red Lobster and a movie afterwards will work. Thursday another B test will be taken to check levels. This should confirm we are on the right track. Bad affects have settled in that can't be changed --- sores in her mouth and a sensitive throat will be with her for weeks. Di refuses to consider a feeding tube. I am monitoring her intake and try my best to keep her on track.

12/15/11 Thursday 4:00 PM  Di was very weak this AM. No secret why, she took a powerful pain drug yesterday AM and it did her in. She got 18 hours of sleep! She did not drink or eat enough. Scheduled activity today -- B test at 9 AM, radiation at 10 AM. We walked to Hollings Cancer Center. I had Di sit in a wheelchair. She thought the fresh air helped but I didn't want to take a chance. B test results -- low magnesium, low potassium, dehydrated too. Right after radiation we headed to the infusion room for a magic potion to rectify the situation. Just got to the Lodge at 3:20 PM. The potion she just received has helped. So far Fridays have been problematic. We decided to have a B test on Thursday 12/22 also. That way they can correct issues if necessary. It will give us a good chance of having a Merry Christmas!

12/11/11 Friday 4:45 PM  Rating today #6.  Radiation went well today.  The potion infused yesterday has helped.  The bad affects of the treatments have accentuated tender areas in her mouth and throat.  I won't go into the details, take it from me you would rather I didn't.  Ensure and water will have to do.  Di lost another 4 pounds over the past week.  She is unable to talk for any length of time.  In case you call, you will have to put up with me, Kris or Kathy.  The gals are planning to be here on Saturday and Sunday. 

Later....

12/17/11 Saturday 8:00 AM  Di's first words this morning were, "I am hungry!".  She drank an Ensure, ate 1 egg and most of a slice of Daley toast.  This may be an 8 day! 

12/18/11 Sunday 9:30 AM  Rating for today starts at 5.  Yesterday I would have thought 6 would be it but by the time I got home she slipped to a 5.  Tired, pain and low water consumption are the challenge.  She did begin taking oxycodone again.  I have split the dose in half and it is not working well enough.  So we'll up the dose to the prescribed full pill soon.  Last time she took a whole pill she slept 16 hours straight!  Pain and tiredness lead me to a lower than 5 rate.  But, the day is young.  Di did eat a helping of cream of wheat for breakfast.  Soon she'll have an Ensure.

Kris and Di watch TV and chat as time passes.  The king size bed is big enough for three.  I wonder if they let will me join them?!

Off to Charleston early on Monday for our last chemo!  Radiation will continue.

Later.....

12/18/11 Sunday 9:30 AM  Rating for today starts at 5.  Yesterday I would have thought 6 would be it but by the time I got home she slipped to a 5.  Tired, pain and low water consumption are the challenge.  She did begin taking oxycodone again.  I have split the dose in half and it is not working well enough.  So we'll up the dose to the prescribed full pill soon.  Last time she took a whole pill she slept 16 hours straight!  Pain and tiredness lead me to a lower than 5 rate.  But, the day is young.  Di did eat a helping of cream of wheat for breakfast.  Soon she'll have an Ensure.

Kris and Di watch TV and chat as time passes.  The king size bed is big enough for three.  I wonder if they let will me join them?!

Off to Charleston early on Monday for our last chemo!  Radiation will continue.

12/19/11 Monday 2:30 PM  We arrived for Di's B Test, then met with Dr Chemo.... The first issue mouth pain. Dr. prescribed a new prescription and it worked fine at lunch time. It numbed the tongue and mouth enough that Di could eat her favorite chicken noodle soup with out a wince! She got a patch for pain. It will last 3 days and then another patch will take its place. It will take 24 hours to reach its maximum strength. Another BT was set for Thursday to check her system. Her white cells are OK today, still low on hydration and magnesium. IV is dripping in liquids to rectify the lows. At 4:30 PM she is scheduled for radiation. We will be finished with chemo by the time most of you read this! We will meet again with Dr. Chemo after a BT on Thursday to check BT and review how the latest drugs are working. If she is low, they will pump in liquids through an IV again. This has been an emotional roller coaster. When the pain is high she can't eat or drink. Oxycodone is so strong it puts her to sleep --- hence water and nutrients are missed. It has been extremely tough, I pray Di can handle the challenge better with pain relief from the drugs.

12/20/11 Tuesday 2:30 PM  Rating today #6. Another radiation down! Shortly thereafter we headed to the Market to buy one more item. Then to the pond where she sat on a bench and tried to read as I walked around the 1/2 mile circle. We tried lunch -- crab chowder -- she ate the same soup a week ago and couldn't get it down today. I could tell the pain med was working. I dropped her off at 1:15 PM and she is sleeping now. I must take another Ensure to her at 3 PM. We are falling behind intake minimum.

12/21/11 Wednesday 9:45 AM  I am earning my stripes as a care-giver! Diane ate poorly yesterday, didn't drink much water either. I knew the latest "pain patch" was working for she had no pain except when it got time to eat. After Bingo last night (we both won a prize) we headed to our room. Di went to sleep immediately and didn't move for 12 hours. When I tried to wake her this AM I knew she was overdosed on something! After a half hour of trying to get her to stand, walk to a chair I knew I needed help. I contacted Dr Chemo for he had prescribed the pain patch. He instructed me to take the patch off. He said the dosage was very low and was surprised she had such a reaction. I rescheduled radiation from 10 AM to 1:45 PM. Plan is to let her sleep off the affects and hope she improves in the next hours. If there is any good news she sure isn't in pain. Doc is not concerned about what I would call an overdose. My next challenge will be to get her to the 1:45 PM radiation. Dr. Chemo said he would see her before or after radiation. I will try to get her up at noon. I am praying I am doing the right thing.

12/21/11 Wednesday 4:00 PM  As time passed Di came around a bit, she got dressed and took a security car ride to Hollings. First stop was for a BT, then off to see Dr Chemo. After exam he confirmed the reaction was to the pain drug. He cut the potency 50% (the weakest available) and sent us to infusion. BT showed mild decrease in magnesium and dehydration. He looked at the tonsil and smiled when he said, "see Mr. Daley, the tumor is gone!" Off we went to infusion where she got water and magnesium for three hours. At 1:30 PM they took her to radiation and she got her 30th ZAP. I sat with her after getting soup. Sorry to say she only ate a couple teaspoons full. At 2:30 PM we were back at Hope Lodge. We tried the 50% patch and it was kicking her butt again. So off it came! She is resting now, I know she is in no danger and hope she sleeps until tomorrow! We will return at 7:30 AM Friday for BT and a meeting with Dr Chemo. Me, well I am beginning to unwind. Tension is no big deal when it is going on at full strength. I usually stay calm, call folks on the phone, change appointments, get security transportation, wheel her to various stations and just be aware of what is going on to be sure the next step is in line. I am off to the grocery for a few recommended items and should be back by 5 PM. Sleep will come easy tonight!

12/23/11 Friday 10:15 AM  Di did not have a good Thursday. She spent most of the day in the room napping. She did fair on liquids but poorly on food. By dinner time she just wanted to stay in the room and watch TV. She attempted another Ensure. Probably the toughest part of being a "caregiver" is trying and trying to find something she will eat and then watch her spit it out with a shiver!! This morning I loaded the car at 6:45 AM. I got Di to the elevator at 7:15 and to Hollings shortly after that. First stop BT, then to infusion. At 9 AM, RN told me she would be there for 4 hours. I decided to jot a note because of all the things I do, writing a note is a tremendous pressure release for me. Di is getting a potion of water, magnesium, potassium and anti-nausea med. Time for a prayer that the latest infusion cures her ills for Christmas. I expect to be on the road to HHI by 2 PM. The roads here are sparsely occupied by cars. The hospital is like 25% staffed. Hope Lodge is empty. Many are waiting for their last treatment before heading to their home. The Manager just asked if we were going to stay over Christmas. "Naw", said I, "I think Di would get a bulldozer and move Charleston to HHI before staying another night!"

12/24/Christmas Eve 8:00 AM  Di had a few tough days in a row .  Yesterday she did perk up some after the infusion.  She went to bed at 4 PM.  She didn't nap, just felt like resting and watching TV.  She has a dozen roses on a bedside table, thanks Kelly and Paul! 

She asked for a pain patch at 8 PM.  This time instead of drowsiness, it caused nausea.  It didn't last long before she returned without the patch!  Spending an hour on the floor retching was a heck of a way to end her day.  She is up now, just finished a bowl of cream of wheat.  The Caregiver went to bed at 8 PM and arose at 6:15 AM.  I can't remember being that tired nor do I remember sleeping for 10 hours.  I might have when is was72 days old instead of 72 years!  I'll be able to handle the challenges far better today!

12/25/11 Christmas Day 7:00  Rating #4, mostly because of low energy, lots of resting, low food and water intake.  Try as I might I can't find the right words to motivate Di to eat and drink more.  It is so easy to empathize, her mouth and throat are very sore.  I know the consequences though, I'll bet we head into infusion on Tuesday.  I'd give all the presents back if she could just eat.  The topical pain killers wok but dissipate rapidly with the intake of liquid or food for they simply wash the drug away.

12/26/2011 Monday 7:30 PM  Di is now a  #7.  Shortly after she started the wash she said she felt light headed.  She wanted to go to HHI ER and get some hydration.   The BT showed numerous levels low so she had an IV for several hours.  She ate well when we got home and is watching TV now.  We will head to Hope Lodge in the early AM.  Although we are scheduled for 10 AM they said we could arrive a bit after that if we wished.  I'll give them a call as we approach Charleston.  We are excited to get the next three zaps and finish the therapy!  I expect the sore throat and mouth to be an issue for several more weeks.

12/27/2011 6:00 PM  A very busy days lead to a late post. After radiation at 10 AM (left HHI at 7:30 AM) we met with both Chemo and radiation docs. They ordered another BT and infusion. We will meet with Dr. Rad after the 10 AM treatment. He said there is a chance he will abort the 35th treatment. Of course Di is taking that as a promise that we can go home tomorrow. Dr. Chemo wants to see her at 2:30 PM, so if we do leave it will be a long dark drive home. My concern is her BT has been consistently showing low magnesium and dehydration. Di has a very difficult time swallowing. It is too painfl to eat foods other than cream of wheat and the taste of liquids is no longer the big issue, all of them burn like fury. I have told both docs that I must have a game plan to handle the lack of nutrients and hydration issues. They both think she will be OK and if we get a BT in HHI, they can direct HHI hosp to do the correct infusion. It will NOT go well, believe ME! They changed her pain med and think tomorrw she will show better tolerance for liquid and solid foods. Sorry for the late post but I had to exchange an item Di bought for Christmas and figured I better do it at 5 PM than try to work it in tomorrow. Dinner bell just rang!

12/27/2011 6:00 PM  A very busy days lead to a late post. After radiation at 10 AM (left HHI at 7:30 AM) we met with both Chemo and radiation docs. They ordered another BT and infusion. We will meet with Dr. Rad after the 10 AM treatment. He said there is a chance he will abort the 35th treatment. Of course Di is taking that as a promise that we can go home tomorrow. Dr. Chemo wants to see her at 2:30 PM, so if we do leave it will be a long dark drive home. My concern is her BT has been consistently showing low magnesium and dehydration. Di has a very difficult time swallowing. It is too painful to eat foods other than cream of wheat and the taste of liquids is no longer the big issue, all of them burn like fury. I have told both docs that I must have a game plan to handle the lack of nutrients and hydration issues. They both think she will be OK and if we get a BT in HHI, they can direct HHI hosp to do the correct infusion. It will NOT go well, believe ME! They changed her pain med and think tomorrow she will show better tolerance for liquid and solid foods. Sorry for the late post but I had to exchange an item Di bought for Christmas and figured I better do it at 5 PM than try to work it in tomorrow. Dinner bell just rang!

12/29/11 Thursday 9:15 AM  Rating probably a #6.  She ate a bowl of Cream of Wheat for breakfast.  I asked her to drink 8 oz. of water and she took a sip of water and said that was enough, her throat hurt!  I know I am going to have to be a PITA because the Doc warned me, eat and drink or back to the ER we go!  I'll post a short message in the later afternoon.

12//29/11 Thursday 8:20 PM  Still a #6.  She is under the influence of Oxycontin.  I had that drug after knee surgery.  It is a strong pain killer.  She is doing some better on intake although not by much.  I think she may finish her 3rd bottle of Ensure.  She has not been lightheaded today.  Talking is not easy.  She listens and after a few sentences tells folks she has to hang up.  That includes me.  I have noticed more than a little feisty response now and then.  The latest was, "I'll get my turn to boss you around some day!"  Of course I am the one telling her it is time to drink, eat, sit up, drink water, take meds, etc.  I do see positive signs!

12/30/11 Friday 4:00 PM  Di is sleeping but she is gaining on the recovery ever so slowly.  Rate #7.  Voice is still weak, tries not to talk much for it starts pain.  She ate a bowl of Cream of Wheat, 1 Ensure, bowl of broccoli/cheese soup for lunch and is soon to get her second Ensure.  She had a little light headed/dizzy issues but they soon passed.

12/31/11 Saturday 5:30 PM  Yesterday I posted a #7, then at 6 PM it started down hill fast.  Pain was awful.  She tried a mouth wash, then a topical numbing agent and nothing seemed to cut the pain.  At 8 PM she took oxycontin and that put her out of pain and to sleep.  Bern (RN) came over this morning at 10:30 AM.  I feared we would be heading to HHH for help.  But to my amazement she rebounded big time!  In fact, this morning was the best in weeks.  She easily ate cream of wheat, drank water w/o a fuss.  She did not have any topical numbing med.  She went outside and sat on the front step.  Said the sun felt divine!   I would rate today 8.  Energy low, still needs to eat more but felt far better than yesterday.  Then came 5:30 PM when I tried to enter this.  She wanted to ward off nausea.  NADA.  I made broth - NADA; then fried egg and toast - NADA; then yogurt and she ate 1/2.  Soon the big pain pill and off to lala land she'll go!