Tuesday, August 31, 2010
We got the 1:45pm shuttle to NIH. Since we couldn't check into our hotel till 4:00pm, we headed upstairs to see some of the nurses that Woody had had during his 3 + week stay. He got and gave several of the nurses hugs. They seemed to be glad to see us...and are wondering how his treatment had gone since leaving them. We also met Dr. Rosatti in the hall. She said that she would be reading Woody's tests tomorrow after they are finished. Everyone thought that he looked good...several commented on his hair loss.
After seeing the nurses, we went downstairs and waited for the shuttle to take us to the hotel. We got here a little after 4pm. We went up to our room and sort of settled in. Woody showered and I changed his dressing, changed the caps on the lines, and flushed the lines. I think we will only have one more day of this type of dressing change...and tomorrow should be the last time that I have to flush the lines with heparin. I'm ready for that detail of our life to be over! After, doing that we went down to the restaurant and I had zucchini gnocci and Woody had a chicken dish. We decided as long as he didn't have a salad that he could have a meal out...as long as everything was well cooked. We both enjoyed our meal.
Tomorrow will be another day of shuttles...shuttling over to NIH and shuttling back to the hotel. All these shuttles that NIH provides are definitely helpful! Tomorrow will once again be a day of tests. I am falling asleep as I type this...I didn't get a lot of sleep last night and it was 12+ hours from leaving the house to settling into the hotel. So I'll be heading back to our room to crash as soon as I post the blog. I sort of expect that Woody will have crashed by the time that I get back.
Monday, August 30, 2010
Woody got up early and read. He ran the Credit Union errand. I had lunch with friends and then we did a bit of fun shopping and then I ran a few errands. Woody has been doing some "honey-do" things for me to help get ready for us to head off dark and early in the morning.
I'll blog from Bethesda tomorrow evening...the good Lord willin'...as Woody would say.
Sunday, August 29, 2010
Woody and I got up REALLY early this morning...normal for him, but not for me. I read for a while, got a load of dishes underway in the dishwasher, read a little in a new book that Woody got me from the library, and I got several piles of laundry ready to be done, and picked up my sewing mess. Woody read for a while, then he showered and I changed his dressing and flushed the lines. After we had done all that, Esther woke up...she had a sleep-over at Grammy and Goosey's last night. I rocked Esther for a while and then we took her back home so she could get ready to go to church. Woody and I got ready for church. We both went to Sunday School. Woody taught his class. After we came home we have pretty much taken it easy for the rest of the day. I have started preparing to pack once again...seems like we just unpacked! We will be leaving dark and early Tuesday.
Saturday, August 28, 2010
Woody got up early and went for a walk. He walked to Sonic and back (no, he didn't get a treat!). He showered and I changed his dressing and flushed his lines. He went to the library. I worked on my "secret" sewing project for Esther's birthday...not much to show for it at this point in the day. It seems like I took one step forward on it and three or four back. I "may" have something to show for my efforts in a few minutes...unless what has happened to the first efforts happens again! The main thing that I have to show for it is a sewing mess in the family room. We were in and out to check on the yard sale and we enjoyed chatting on our front porch with friends who came to the yard sale and then came over to see us.
We both attempted to watch a movie this afternoon...and, it must not have been too attention getting, as we both snoozed through a good portion of it. I must have been tired as I was not in a very comfortable chair and I still dozed. Later in the afternoon, one, two, three, or more of the grandchildren filtered in and out while their parents and grandparents (Kathy's parents are here) cleaned up after the yard sale.
We were sitting on the front porch when the mail carrier stopped with our mail and Nathan's (she said that she wasn't sure that she was going to be able to get to their mail box due to yard sale cars). She also had a box...from NIH...with a LOT of heparin syringes...definitely don't think that we will run out between now and Wednesday! Looks like the pharmacy did send what we had requested...but just not the fastest way.
Friday, August 27, 2010
Off and on today we had a child or two filter through the house. But the yard sale kept them pretty busy too. Lots to interest them since others brought toys for the sale. Woody got up early and went for a walk around our block. He went over and priced a couple more things for the sale. He went to the fruit market for tomatoes and a green pepper. He has read, watched TV, helped me with dishes, and rested.
I made a big pot of chili and froze part of it for another time. I went grocery shopping. I also enjoyed seeing several friends, who I hadn't seen in a while, at the yard sale.
While I was at the grocery store, Fed Ex delivered the much needed syringes of heparin that I needed to flush the lines. So we didn't get to change the dressing and flush the lines till mid afternoon. But we now have plenty to get us through till he has the Hickman line out on Thursday.
This evening we went over to Nathan and Kathy's to celebrate Esther's third birthday. Her birthday was several weeks ago, but we and they were away at the time of her birthday, plus Kathy's parents are here so it was a good time for a family party for Esther. I ended up reading the three girls several stories and didn't leave till it was dark. When I left, there were still people at the yard sale!
Thursday, August 26, 2010
Woody got up earlier than me today...thank goodness as my alarm didn't go off at 4:15am as it was supposed to (wouldn't you know that it wouldn't when you need it to!). Nathan, Abigail and I set off for Nashville and Vanderbilt Children's Hospital around 4:40am. We got to the hospital a little after 6am. Abigail's surgery was scheduled for 7:45am, but they didn't take her to surgery till 8am. It was a quick surgery and she did well. We were back on the road to Tullahoma a little after 9am and we were home by 10:30am.
While I was gone Woody cleaned up the kitchen, went to the Post Office, read, and priced yardsale items. After I got home, Woody showered and I changed his dressing and flushed his lines.
We are waiting for more heparin syringes that we use to flush his lines to come from NIH as we ran out today. I contacted them on Sunday when I realized that they hadn't given us enough to make it through till we see them next week. And they were supposed to send us more, but so far they haven't arrived. We did receive an overnighted package of supplies (Tues.) that we needed...but the syringes were being sent by the pharmacy. Maybe they will arrive tomorrow. I will be on the phone in the morning to see if there is a solution to the problem if they don't arrive tomorrow.
Oh, one of the ladies in the Post Office this morning asked Woody about his new do!
Y'all come tomorrow, if you are in our vicinity...come check and see if perhaps Nathan and Kathy might have a treasure for you!
Wednesday, August 25, 2010
Tuesday, August 24, 2010
Woody and I both got up early this morning. Woody didn't go walking as he had several things to do today that he counted as his walk. I made us a Swiss cheese and mushroom omelet...and that was my cooking for the day. The rest of the day we either had sandwiches or leftovers. He showered a little after breakfast and I changed his dressing and flushed his lines. After I got dressed, I went to find "school children"...but they were away...Abigail and Kathy had gone to Abigail's speech class and I'm not sure where the rest were! Since I got up so early, I flopped down on the bed to read and took a morning nap. Woody did a little yard work. After lunch, we had a meeting that we both needed to attend. Shortly after we got home, Nathan and family parked their van and trailer in front of our house. They had come to pick up the aluminum cans that we and many church members have been collecting since the last trip to the "can man." The money from recycling these cans is for the International Missions Board annual Lottie Moon Christmas offering. Woody went with Nathan, Kathy, Joy, Esther, and Elijah. Graham and Abigail stayed with me. Graham read from a reading book to me and then I read to the two of them. Abigail and I played several games of tic tac toe. And, then we went upstairs for them to do some crafts. After the "can crew" got back, Woody and I ate some supper. Woody is now resting in his recliner. It has been a pretty day...a pretty busy day!
Monday, August 23, 2010
At that point I was ready for a rest and Woody sent me upstairs to do just that! Well, rest I did...I ended up taking about a two-hour nap. After awakening I went downstairs and got the lunch mess cleaned up. Woody has gone to church for the Monday night prayer time. Woody has been going through some papers today and organizing them. So we have all had a pretty busy day. Woody also finished reading a book today.
Tonight's picture is one that I took on one of our walks...it is a cute playhouse in a backyard in a near-by neighborhood.
Sunday, August 22, 2010
Saturday, August 21, 2010
Woody got up early and went on a four mile walk. He does say that, when he gets back from his walks or other outside exertion, he is ready to plop and do nothing for a while. After he showered, I changed his dressing and flushed the lines. Later in the morning he went to the library. The grandchildren have been over at various times during the day...nice having them "in and out" once again. This evening we went over to visit with friends and sat out on their screened-in porch...really nice. A storm was brewing so we left before the heavens opened. We have had a couple of storms roll through today.
Friday, August 20, 2010
Woody got up early and walked two miles. He said that he took it slow and easy. After he showered, I changed his dressing and flushed the lines. This was grocery shopping day for me. We flopped back to having our main meal in the evening and having sandwiches at lunch, since I went to the store not long before lunchtime. When I got back from the store, Woody was snoozing in the recliner. He never heard me till about the time I put the last item away! Now was he really snoozing or was he just conveniently keeping his eyes closed????!!!! He did a bit of picking up sticks and trimming some ground cover and cleaning debris off sidewalks and some of the driveway. So he is gradually adding some activities back into his day. But he is still resting a good part of the day.
The grandchildren were intrigued with Goosey's bald head! Several had to touch his head to check it out.
Thursday, August 19, 2010
Wednesday, August 18, 2010
Then when I came home from lunch, I contacted a hotel that we had stayed at before...one that has special rates for NIH patients and a shuttle to and from NIH. I managed to get the NIH rate for all three nights.
We will be flying out of Nashville on Tuesday, August 31, and returning on September 3. He has appointments on September 1 for labs, MRI, and scans. Then on Sept. 2, he will have apheresis and meet with the doctor. The doctor will (hopefully!) take out the Hickman line at that time.
Woody attempted to do a bit of work in the yard today...picking up the multitude of sticks that have come down in our recent storms and do a bit of raking...but the weather didn't cooperate with him very well. It has drizzled off and on all day.
Tuesday, August 17, 2010
We again had our main meal at lunch...but not at the same time as I had a hair appointment at noon. Woody cooked more pasta to go with the leftover spaghetti sauce and fixed his own lunch. On my way home from getting my hair cut, I stopped to see a dear friend and we talked quite a while catching up with each other. By the time I ate my lunch it was time for my afternoon nap! Woody brought our garbage can around to the front of the house and he took the recycle items out to the curb. So you can see that, he is gradually getting back to doing things around the house. He has rested today, as he should be doing.
Oh... my homemade applesauce is good...but Woody declares it to not be as good as my mothers! At least I know the "secret" ingredients that she puts in hers...I wrote them down so I can keep trying!
Monday, August 16, 2010
Just before lunch I called the plumber to come fix the water heater...the thermostats had gone out so we had either boiling hot water or no hot water at all. They came later in the afternoon. So that is fixed now. I will be so glad not to have to push the reset button all the time!
We had a light supper. Woody went to the prayer meeting at church this evening. This is the first time in months that he has felt well enough to go. I have made an attempt to make homemade applesauce. Woody was wanting some like my mother's when he was in the hospital. So I am attempting to make some like hers...I made a call to Mother this afternoon to find out just exactly what she puts in hers. All the grandchildren love Grandma's applesauce...obviously Woody does too. I think that the jury is still out as to whether mine comes even close to hers!
Sunday, August 15, 2010
As many of you know I'm not praying to be healed. My one and only prayer, which I pray many many times, is that God's will be done. For a number of years I've attempted not to pray for any thing unless I know it's God's will. Now this is not a hard and fast rule--but just an attempt I've been making for some time.
Now most of you know I'm a guinea pig in a research program--the 37th guinea pig to be in this particular study. They've been developing this protocol for over ten years trying to get it to work. They lost quite a few patients in the beginning years as they were learning what worked and what didn't work. Currently the majority of patients in this protocol have no improvement. But some have absolutely miraculous results. And some have mixed results. One lady had a huge tumor in an internal organ and a small tumor somewhere else. The huge tumor was completely gone, the small tumor was still there. They surgically removed the small tumor and she's been symptom free for six years.
First off I'd like to thank each of you for praying for me to this point--as you probably know I'm functional and could fool a lot of people into thinking I'm perfectly healthy.
Now, while I'm not willing to pray anything about my health except God's will be done, I know most of y'all haven't so limited yourselves. So I'm going to ask those who wish to do so to pray for total healing. And according to NIH folk if this is to occur it will happen in the next two or three months! So we're in a crucial period. I have 48.6 billion tumor-infiltrating lymphocytes that have hopefully multiplied to even greater numbers and it's time to see if they're going to be able to fight the cancer.
Now I very much believe in praying specifically so I thought I would list my tumors in case you wanted to pray even more specifically. They are
1)perhaps one on top of my head (black area) that we just found when my hair came out!
2)behind my right ear (like a swollen lymph node, but dark under the skin)
3)two tiny rock hard places under a dark spot on my skin on my sternum
4)in my left calf (a hard dark spot that actually sticks out a little)
These four are visible and easy to keep track of
5)under my left arm pit
6)under my right arm pit
7)on my right scapula
8)one to several in my chest (subcutaneous)
9)Maybe one on my liver (Dr. Rosati said she saw something on a Vanderbilt scan (nobody else saw it), so I had to have a liver scan on my previous trip--but I never found out the results
10)in the bones below and above my left knee (Dr. Sosman said if we were to treat those surgically it would require a total knee replacement)
11)in a bone in my right leg
Of course, this doesn't include the three I've had surgically removed.
1)golf ball (small lime) size tumor from my upper left arm bone
2)apricot size from my right side
3)peach size from my left scapula
(No need to pray for these. If surgery got it all it will never return and I'll never get another melanoma from surgical removal of a tumor (as told by Dr. Prieto at NIH))
So you can see praying for total healing is a tall order. So maybe, if you'd like to pray that each of the tumors gets healed, calling each out by name, you now have that option.
Back to Lois' words:
We got up this morning, Woody showered, I changed his dressing and flushed the lines that go into his Hickman line, we both got ready and went to Sunday School. Woody taught his Sunday School class. When we came home I attempted a new dish that you view in the picture above. It is called "Balsamic Chicken." Woody checked out a cookbook at the library yesterday and decided that this recipe looked good. Since I had all the ingredients, I decided to try it today. I think that I need a few more lessons on "plating up" a dish. I drizzled parsley olive oil around the plate and then dropped reduced balsamic vinegar onto the olive oil and then placed the chicken pieces on sauteed mushrooms. I did wipe the plate clean around the edges...but it looks like I could have done a better job! Oh, well, at least the end results were declared a "keeper" by Woody. The dish was quite tasty.
Woody has rested this afternoon. He still knows that his body hasn't remade all its red blood cells, platelets, etc. He tires quite easily. He walked to the compost pile this afternoon (Where in the world is the compost boy when we need him!?)...Woody definitely felt the effort of doing that and came back in to rest in his recliner. One of the times that he abandoned his recliner, I claimed it to sit for a few minutes and promptly fell asleep for a little while. Guess that recliner is helping us both rest!
Saturday, August 14, 2010
Woody continues to recoup from his treatments at NIH. He went to the library this morning...the first time that he ventured out alone in the car since we were home. This time he remembered to take his clamp with him. He brought home a couple of movies. One of which he watched in the afternoon (I followed it listening from the kitchen and sat down a couple of times to watch parts of it). It was one of those movies that when it ended, we wondered what exactly had happened. But we think that we figured it out! After the movie, Woody watched a baseball game on TV. Then I can't report on how he spent his evening...since I slept the evening away...and now he is asleep so I can't ask him! But I would say that "slowly but surely" he is rebounding from having his immune system wiped out.
Now to explain why I said, in the above paragraph, that "this time" he remembered to take his clamp with him. Last night when we went to the Sunday School Teacher Appreciation Dinner, Woody leaned over to me during the dinner and asked me if I had remembered to bring the clamp...the item that I was told at my Hickman line class at NIH that we were not to leave home without! Another OOPS! Lots to remember about his Hickman line...I've been doing pretty well just remembering exactly how to change the dressing and flush the lines! Last night was the first time that Woody had left the house since we got home and neither of us thought about taking it.
We had a really good time at the dinner at church last night. If laughter is good for healing...then Woody should be healed, as we laughed so much during the entertainment! Plus we just enjoyed spending the evening with so many special friends.
A storm has rolled through while I typed this...good to get some rain...pretty dry around here due to so many days of excessive heat. I am still using pictures that I took in Bethesda. The lodge where I stayed is the backdrop for the robin that posed so nicely on the tip-top of this sweet gum tree.
Friday, August 13, 2010
Thursday, August 12, 2010
Woody weighed this morning and he has lost about 15 pounds since going into NIH 3 weeks ago. He knew ahead of time that he would lose weight so he had put on some weight before heading in for the treatments. It was hard to know how much he had lost at NIH as they weigh in kilograms.
Following doctor's orders, Woody won't be returning to work until he goes back to NIH on Sept. 1 and 2...at that time the research team will assess whether he is ready to head back after we return. I think that it is good that they told him not to return until then. He really needs to take it easy and let his immune system and all his counts, etc. build back up. He is finding out that he tires rather easily. His blood pressure was still rather low this morning...so we are watching that...looks like he shouldn't have been started back on his blood pressure medicine yesterday.
I think that I might be more wiped out than Woody (probably not)! This afternoon I was sitting on the couch and not long after I sat down I was asleep. We both slept very well last night...good to be back sleeping in our own bed! I ran errands this morning and then this afternoon did a few more. We picked veggies from Nathan and Kathy's garden this afternoon...very hot (Weather Bug says that it got to 101!)! Woody did wear a cap...his St. Louis Cardinal cap look.
Speaking of Kathy and Nathan...HAPPY 10th ANNIVERSARY!
Wednesday, August 11, 2010
We left the inpatient oncology unit at 9:30 (8:30 central) this morning and we walked into our house at 6:30 central time this evening...a very long day! We left NIH at 10am on the shuttle headed for BWI (Baltimore/Washington International) airport. We got to the airport around 11am. We got Woody's boarding pass and a wheel chair and headed toward security. It was a bit of a struggle for me as I had to take care of all the carry-ons and both our shoes and the laptop...as Woody got taken through security by himself due to being in a wheel chair. Once we got "it" all together again we were off to find the elevator to get to the correct floor for our gate. They were so nice at the security gates...telling us exactly where the elevator was. I walked right by Woody when I got through security...didn't recognize from the back at first! Got to get used to that shaved head!
Once we found the elevator, we were off to find our gate...we got to our gate three hours prior to our flight! We people watched...saw one family with six children who had a set of twins. Then in a few minutes there was another family with twins. I got something to eat...Woody couldn't as he isn't supposed to eat restaurant food at the moment...he had a granola bar. Around 2pm (eastern) we found out that our flight was delayed. Then it was announced that our flight was overbooked. Then when the airplane finally came in, we were told that they had changed planes. Then before we were to get on the plane, we were told that there would be further delay due to some computer problems! We finally got to get on...Woody was wheeled on in style and I followed right behind! Woody decided that he wanted to sit by the window and he enjoyed looking out during the flight...the clouds were beautiful for a while and then part of the time he could see stuff on the ground. I had a very interesting lady sitting to my left and enjoyed talking with her during the flight. She is from the Bethesda area and when we were picking up our baggage she gave us her business card and told us to contact her if we needed anything when were at NIH in the future. We took off about an hour late and got in an hour late (makes sense!). We found the elevator and went downstairs to the baggage area...when we got there, I called Melany to see where she was...she had just gotten to the baggage area...I told her we were at carousel 5...and the next thing I knew there she was...couldn't have been better timing. We got our luggage and then proceeded to her vehicle. Woody did walk from the airport door out to the parking lot. Heat and humidity greeted us as we walked out the door. I haven't cooled down since. It was 85 in the downstairs...and I'm afraid to guess how hot it is upstairs...not sure that it will cool down enough to sleep tonight!
Right now Woody is light headed...probably a blood pressure problem...they started him back on his blood pressure medicine this morning and it was probably too soon after the IL-2 which drops blood pressure. And, he has discovered that he gets tired very quickly...which he should!
Now to rest and recoup after a long 3 weeks and 3 days away from home!
Tuesday, August 10, 2010
Guess what Woody let the nurse do this morning! The top left picture is how he greeted me upon my arrival at the hospital today. Then he started trying on the hats that Alex and Graham had given him. Alex gave him the St. Louis Cardinal cap. Graham crocheted him the hat in the bottom picture. Personally I think that he looks great all three ways!
Woody did spend a couple of hours connected to an IV, as he had to have more red blood cells today. Once that was done Woody was pretty much an ideal patient for a nurse for the rest of the day (not much to be done to or for him!).
BIG News!!!!!!!!!!!!!!! The doctors said that Woody could go home tomorrow (Wed.)! So the day was spent getting him an airline ticket (NIH arranges for and pays for his) and then getting me a ticket for the same flight (I have to arrange and pay for mine). I came back to the lodge to use one of their guest computers and printers and printed out our boarding passes. Woody's isn't a boarding pass, but a security document...maybe because of the request for a wheel chair? Then supplies had to be gathered...one of the nurses had already gotten most of the things that we will need...but then I went over all the things that I have to do to dress the Hickman line and realized that we needed several other items. I had to go to the NIH pharmacy to pick up two prescriptions for him and also the heparin syringes that have to be used to flush the Hickman line. I practiced flushing his Hickman line and changing the dressing. I got Woody's suitcase packed this evening before I left to go back to the lodge. I am now back at the lodge. After I blog, I will be getting my suitcase packed.
I did ask for a wheel chair for Woody at the airport. Even though he is feeling pretty good, he doesn't need to tax his strength walking through the Baltimore/Washington International airport.
We have to catch the 10am shuttle to BWI airport. It's about a 45min. to 1 hour ride to the airport. Our flight leaves at 2:10pm (eastern time). We will be back in Nashville around 3pm (central time). After Melany finishes her school day, she will come pick us up and take us home.
So, if all goes as planned, I will be blogging from home tomorrow night...that is, as Woody says, "the good Lord willin'."
Monday, August 9, 2010
Woody definitely has felt better today than he has in some time. He said that he was able to sleep 8 hours (in snatches) last night. He got up early and did laps around the unit that totalled 1 mile...then before I left tonight we walked laps that equaled 1/2 mile. He doesn't have to wear a mask when he goes out of the room now. He ate better today, too...he's still not thrilled with food...but today he managed to eat well at all three meals. And, he did say that some things tasted better today than they have lately.
He entered the hospital three weeks ago today.
Sunday, August 8, 2010
Woody's counts continue to rise (a good thing). His neutrophil count today was such that, if it is that for two more days, he will no longer be considered neutropenic. Now...at another time I was told that if the numbers were high enough tomorrow...that might make him no longer neutropenic. Guess we will find out tomorrow! Nurse Joan started gathering supplies for us to take home. Woody will have to wear two medic alert bracelets...one says that he is to be given no steroids except for an emergency...the other says that if he needs blood that it needs to have been irradiated. And, he has to carry a card in his wallet that says to contact NIH before any type of treatments. This card has needed phone numbers on it. So it looks like things are in the process for him to be released. We will see what the docs say when they make their rounds tomorrow. Woody still wonders if he is really ready to go home. He did feel better today than he did yesterday...his energy level is still very low. We did walk five "laps" around the unit today. As soon as he isn't neutropenic, we can go for a walk outside the unit...he might feel better if he could get some fresh air. He still has no appetite...only eats because he must! Today he had to take magnesium and potassium supplements. They took him off the new antibiotics that he started yesterday. His temperature has stayed down today. So all in all things are looking up (I think)!
Saturday, August 7, 2010
Friday, August 6, 2010
This has been an interesting day. When I got to the hospital this morning, the nurse was preparing things for Woody to get platelets. About an hour after he got platelets he got a unit of red blood cells and after the first unit of red blood cells he got another unit of red blood cells. He was connected to an IV for a good percentage of the day. Later this afternoon, he started running a fever higher than is allowed when he is neutropenic...meaning that when it gets that high...and I'm not sure how high that is due to it being quoted in metrics...I'm not sure if it is 1oo.4 or 101.4...anyway, it got high enough that they had to start calling in his doctors, the infectious disease team, chest x-ray, lots of blood work, etc. He definitely didn't feel the greatest this afternoon...mainly just tired and he could tell that he had a fever. He will be getting a different antibiotic...probably two.
My feeling about why this is happening...the red blood infusions...the last time that he got red blood cells, he ran a fever and had to go through all this extra testing...I did tell the infectious disease team that was my guess!
As far as his counts, the creatinine level is back into the normal range...that is good! His neutrophils doubled from yesterday...again a good sign. So some things are heading in the right direction.
Thursday, August 5, 2010
Woody is improving slowly but surely. The doctor told him that his neutrophils were up again today...and that they had tripled since yesterday...not a huge number...but if they continue to triple every day that soon he would no longer be neutropenic. This is the first day that going home has come up...the doctor said that if things continue in the direction that they are going that he will probably be able to go home next week. Woody and I made 15 "laps" around the unit...we were told later that 20 equals a mile...so guess we walked 3/4 of a mile. Woody seemed to take a very restful nap a little before I left. When he woke up, I took a banana, some graham crackers, and some vanilla pudding and made Woody some "banana pudding." He really doesn't have much of an appetite...hard to tempt him...he seemed to enjoy this concoction.
I finished another book today and made another trip up to the NIH patient library. Two storms blew through today. It was supposed to be an extra hot day...but by the time I left at 7:30 this evening, it was very nice out...in the 70's...thanks to the storms. The deer ran across the street and back down into their evening grazing area. This morning I got some more pictures of the baby bunnies. Tonight I came back to the lodge and was in the kitchen eating a salad and a young lady came in. Her mother is a patient at NIH. They are from Toronto, Canada. She sat down at the table I was sitting at and we talked for a while (thus the late hour of the blog).
Wednesday, August 4, 2010
Things are going fairly well for Woody. He is still very low in his counts that I reported last night...but some are coming up. The doctors said today that the counts that should be coming up are and the ones that need to be coming down are...so at least "things" are moving in the right direction according to the docs. Yesterday's WBC was .90, today's 1.22; Yesterday's RBC was 2.96, today's 2.87 (oops that one went down); Yesterday's platelet count 27, today's 17 (again down...and he did received more platelets today); Yesterday's neutrophil absolute 0.00, today's 0.05 (slow...but on the way up). So looks like things will be going back and forth for a while longer. They are really pleased to see the neutrophils on the upward swing.
Today he walked more around the unit. One of the times we made 11 trips around without stopping at his room...he got stopped before he started on his 12th trip, as the nurse needed him back in the room. I think that he had lost some more weight this morning, but I don't know how much.
I went to the class to learn how to care for his Hickman line when he goes home. Now I "get" to practice when they change the dressing and flush the lines...oh, boy! I did flush his line this evening after he received an IV...he survived!
Today Woody has been conducting a survey of the nurses that come into his room..."Are bald men sexier?" He has only gotten three "no's." The majority have said "yes." His nurse today gave a resounding "yes." He later learned that she had a boy friend...after she left the room he said that he had figured out something...so when she came back into his room later, he told her that her boyfriend must be bald and she wondered how he knew...he said by her answer! It has kept the day lively! The nurse from Russia said that it wasn't good to be considered "sexy" at the time she was growing up in Russia...so she didn't answer the "sexier question.." She said that she thought being bald made men look very smart! Never a dull moment in Woody's room!
There is evidence of hair on Woody's pillow...he is blaming Snoopy! He has a pillow case with Snoopy and the Peanuts Gang on it...so he says that Snoopy is responsible for shedding on his pillow. So far he has held onto most of his hair...time will tell...if I have to change my answer to his survey!!!!!!
Tuesday, August 3, 2010
I will share some of his counts for those interested. WBC .90 [4.23-9.07 K/uL]; RBC 2.96 [4.63-6.08 M/uL]; Platelet Count 27 [161-347 K/uL]; Neutrophil Absolute (ANC) 0.00 [1.78-5.38 K/uL]. I know that my nurse friends will be interested and for the rest at least you can see that he is low! The numbers in the brackets are the range in which these should fall.
Woody pretty much gave a summary of his "sinking" time last night. He definitely is much better today. Hopefully he is now on the rebound. We were very glad to hear that his creatinine level is going down. He is still losing water weight. He lost another two pounds from yesterday's weigh-in. So he has lost a total of 10 1/2 pounds since Sunday. He still got lasix one time today which gave him a lot of exercise getting up to go to the bathroom about every 10 minutes. Getting up and down exhausts him. He still has next to no appetite...so he's not eating very well.
And, now...Goosey and I wish Esther-Noel a very happy birthday! She is now a BIG girl of 3!
Last evening when Lois left at about 7:30, I wanted that bed so badly and I just wanted to sleep. I woke up several hours later saying to myself I've had a setback. I'm so tired I can't move. Maybe I've got a fever, maybe the platelets they gave me today have done something, or maybe I've moved one step closer to renal failure again. At 2:30AM I woke up and felt pretty good. I immediately started going through these questions again--what happened? I ruled out a fever since I wasn't sweaty. Then I went back to sleep with these questions in mind.
When I woke up, I had had a dream. Now I have a dream that I remember maybe once a year! Anyway--here is the dream: I'm up above this restaurant and somehow I know it's a busy hot dog restaurant. And somehow I come to know its known for its special sauce. Now all of a sudden I'm over this truck that has this liquid in it. Next thing I know I've fallen in it--it's pig poop. And I'm drowning in it. Somehow I'm saved and the next thing I know I'm seated in the restaurant eating a hot dog. Almost immediately clamors all over the restaurant arise about the special sauce. It's horrible, it's inedible. The manager checks with the guy who made the sauce fresh that morning. He says he followed the recipe precisely and plus people had been eating hot dogs all morning and no complaining. The manager said, "We must have been sabotaged." A guy in the back stepped forward and said, "I've been standing by the special sauce all morning and no one could possibly have done anything to the sauce." Then all eyes turn to me. I fell in the pig poop at the same time the sauce went bad. My falling in the pig poop made the sauce go bad. The dream ends.
I immediately say to myself dreams are supposed to have meanings. I've been asking all these questions over and over in my mind, maybe my dream is trying to tell me something. So immediately I put part of it together. The setback is due to me falling in the pig poop. The only problem is I still don't know what the pig poop is. Fortunately, I talked to the doctor this morning and she knew what the pig poop is--so we have closure maybe. She said that there is an expected setback that all patients who have been given their own cells experience five days later--and what I had experienced sounded exactly like it. I think that my dream may have been talking about the problem with my whole body. And, in that case the pig poop is melanoma. Lois and two nurses say the pig poop is symbolic of all the diarrhea I have had. What do you think?
Monday, August 2, 2010
Woody had lots happen this morning...they came in and took 16 vials of blood...he thought that was a record, but we found out later that they had taken that much about 10 days ago. He got weighed and found out that he had lost 6 1/2 pounds since yesterday...so a total loss of 8 1/2 pounds in two days...although those who are trying to lose weight might think that this sounds wonderful...his weight loss has all be in fluid loss...so not so ideal in the number of trips to the bathroom! His breathing is less labored today...but he still tires very easily. He is supposed to be picking up in his drinking to get his kidneys functioning correctly...but water (any liquid) isn't very appealing to him...he hasn't drunk more than sips in the last few days...he "tried" to drink more today...rather I "tried" to get him to drink...not sure that I was very successful!
He is calling his IV pole his "dancing partner." But he will tell you that there is a major problem as he doesn't dance! He is only connected to an IV for medicine at this point. They don't want to put in any more fluid than is necessary at the moment...but he IS SUPPOSED to be DRINKING!!!!!!!!
I left a bit earlier this evening as he was getting pretty sleepy. He had me turn off the computer and he was hoping to get some sleep in between trips to the bathroom, vital sign taking, and other interruptions. They did give him some more Lasix this afternoon...but they can't give him too much since his creatinine continues to rise. I had the nurse print off this morning's reports and then I checked his creatinine levels when they were so high when he was at Vanderbilt...and they still have a long way to go to get that high...hoping that upward trend starts going down soon!
When the doctors talk to him, they continue to tell him how pleased they are with the way things have gone so far. It is just a waiting game for him to start rebounding...so far not much rebound...have no idea how long it will be and we haven't asked! We have been here for two weeks now...they told us from the get-go that we would be here a minimum of three weeks.
When I got ready to take a picture of the bag of platelets that he was receiving, I assured the nurse that I wouldn't get her in the picture...just the bag of platelets. But, she asked to be in the picture...she's hoping that some eligible man out there reading this will take note of her and be in contact with us about her!
Sunday, August 1, 2010
He received very good comments from all the doctors today...including Dr. Rosenberg, the head of Woody's research protocol and many, many others. He told Woody that they were very pleased with the way things were going for Woody. Later in the day the main doctor for the weekend and Woody's Fellow (neither who are "fellows" as Woody would say!) came in and were very positive with him also. He was "warned" that there may be some tough times ahead and that he could even still end up in ICU. His creatinine levels (kidney function) continue to rise (normal according to Dr. Rosenberg...and of course we know that happened to him last time). He is also still having hallucinations...which could worsen according to the doctors...and...either of these could send him to ICU...along with other unknowns. They say that these hallucinations are described by other patients as very vivid. He was seeing patterns on the walls today and of course the other day he saw spider webs all over the floor. He says that the "visions' that he has when his eyes are closed are not pleasant...but he does still know that they aren't real...and that opening his eyes usually makes them go away. This evening, he thought that the hallucinations were getting less. He is still neutropenic...but his neutrophils are starting to rise...a good sign. And, he hasn't had a fever...as a matter of fact it is a little below normal. His blood pressure has been good too.
What is being anticipated by the doctors is...what might happen when his body starts making its own IL-2 and it meets all these billions of new cells. So the next couple of days may not be the most pleasant for Woody. Today they continued to try to rid his body of retained fluid. They started doubling up his lasix and that seemed to work...he had lost two pounds since yesterday morning when they weighed him this morning. At the end of the day his breathing didn't seem quite so labored when he got up and walked.
He spent the afternoon keeping up with a baseball game on the computer. They have a computer/TV on a movable arm next to his bed. We have it set up so he can sit in a chair and look at things on the computer (reason to be out of bed). He hasn't had much interest in the TV...but has enjoyed keeping up with his baseball team and of course the blog...he likes finding out what ails him and what his day has been like by reading the blog! He enjoys the comments and seeing where in the states and the world people are looking at the blog.
We are thinking that yesterday's mystery bird may be a falcon...perhaps a peregrine? One of our friends living in England at the moment thought that it looked like a falcon that lives in her neighborhood in Illinois. And, Melany looked up birds in the bird book that she has on her Ipod and she also thought that it might be a falcon. Still interested in other bird experts' thoughts! Saw this bird soaring several times outside of Woody's hospital window today. I can now recognize its call and usually can spot it when I hear it. I think that it must enjoy the wooded area around here...lots of prey!
When I left tonight, he was hoping to get some much needed sleep...if he dozes it seems that someone always comes in for some reason or another...maybe tonight will be a quiet one for him.
I warned the person at the lodge desk that I had found what is in tonight's picture being built right next to the sidewalk where the guests walk...I will look tomorrow and if it is still there I will tell them again...figure that they would like to take care of it while it is small!