Watchin' Him Like a Hawk...or...Keepin' an Eagle Eye on Him!

The research team and nurses are keeping a close watch on all of Woody's tests, vitals, etc. Today there has been one goal = get rid of fluids. He has only been hooked up to an IV when he was getting meds...they don't want him to have any extra. They have given him Lasix at regular intervals today to help the process along. Today his neutrophils aren't measurable...so hopefully he is as low as he is going to go in the process of destroying his immune system...I'm ready for it to start building back up. The doctors praised him for getting 7 IL-2 infusions. They also told him that he may have some rough days ahead when his body starts making its own IL-2. He is also having injections in his stomach to help stimulate white blood cell production...so far he has two of those injections.

Moving around the room is still a big effort for him due to all the fluids that he is retaining. He huffs and puffs (and he isn't the big bad wolf!) with just the least movement. He is more comfortable sitting up in a chair. He also is hallucinating at times...he says really strange "dreams." Most of the time these happen with his eyes closed...but he did describe the time that there was a whole network of spider webs across the floor in front of him. They keep asking if he is having illusions...so guess it is a side effect of "something" that he has had!

Woody told me this morning about a discussion that he had with his last night's nurse, the missionary kid from China. She said that her brother went the opposite way when he grew up...he is now an atheist. Woody shared with her a way to witness to an atheist. She said that it is so hard when the person is someone in your own family. He asks that we pray for her and for her brother.

I came back to the lodge this afternoon and took a nap. Then went back to the hospital and did a load of wash for Woody. I finished my 484 page book today and started the one that I checked out from the hospital library.

And, now a question for the bird experts out there...hawk or eagle...that I managed to get a picture of on my walk back to the lodge today? Don't have a bird book here...and so far haven't found a picture on the internet that matches up to this majestic bird!

7th and Last IL-2 Infusion (We think!)

The research team indicated this afternoon that his 3pm IL-2 infusion would be his last...but then the Fellow for tonight came in a little before I left and he indicated that Woody might have another at 11pm. But Woody just called me and said that there were some problems that would indicate that he wouldn't be getting another infusion. Woody told the doctors this afternoon that "7" was the perfect number...according to the Bible...he got an interesting reaction back...the head of the team said that he didn't know about "that" (Bible or 7 infusions?).

While the young lady from El Salvador mopped his floor today...she turned to Woody and asked him to pray for someone.

Speaking of the young lady from El Salvador...NIH is definitely a melting pot of cultures. We have met people from Ethiopia, India, Germany, Belgium, Greece, El Salvador, Haiti, South Korea, Philippines, Mauritania, China (Woody's nurse tonight grew up in China...she was a missionary kid)...a couple of night's ago his nurse was a Buddhist nun. We wish that we had brought a world map so we could have colored in all the countries of the people that have touched our lives here. A very interesting place!

Woody is still very neutropenic (see last night's blog)...his white count should be between 4 and 10...last night he was .14. today .04...think that it is time to get the bone marrow growing again!

When the doctor came in this afternoon, he asked me how I observed Woody...whether he was doing anything that he wouldn't normally...talking crazy or anything. After I told him that he was very much in his right mind, the doctor stage whispered to Woody: "This is a time you can say anything you want!" Oh, well...at least some of the docs have a sense of humor!

Today when the chaplain intern came in to talk to Woody, he ended up counseling and sharing with her! He is very much in his right mind.

I will say that he is doing much better with this IL-2 than he did when he got it at Vanderbilt...but it isn't without its side effects. He is rather bloated as IL-2 sort of sucks up fluids...so they are constantly checking his ankles, etc. Well, Woody's fluid retention is all around his belly...and thus he is short of breath when he exerts at all. Lots of rebounding for him to do in the next week or so! Please pray for this rebound!

Tonight's picture shows a sign that showed up a day or so ago taped to the name plate outside Woody's room...I asked today what it meant..."danger of falling." Hmmmmmm he has been labeled again!

Neutropenic

Woody is now considered neutropenic...the above signs are on the outside of his door. Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBC's) produced in the bone marrow that ingest bacteria. Woody's white count today was .14...normal white counts are 4-10. He feels very lethargic...has slept quite a bit. He did eat a good breakfast and a good lunch...wasn't very hungry when supper time rolled around. His red blood cells are very low too...and today he was given two units of red blood cells. So far he has had four IL-2 infusions...he has had rigors (shakes/quakes) with three of the infusions...but none as strong or as long as he had with the first of these infusions...about 20 min. was the longest duration. He is running a fever of 101.1...so that meant that he had to have blood taken...to test for any type of infection. Due to his platelets dropping, he has had a bit of a problem with bleeding.

Storms brewed up a couple of times today...but we stayed safe and dry in the hospital room! I have just about finished a 500 page book that I borrowed from the library here at the lodge...guess I will be looking for a new one very soon...quite a bit of time to read!

Your continued prayers are much appreciated!

48.6 Billion Cells

Here are Woody's TIL cells (all 48.6 billion of them)...this is what they got out of the six large bags like Woody was holding yesterday. TIL stands for Tumor Infiltrating Lymphocytes. This milky substance is what they "strained" out of those large bags. This is the only bag of cells that he will receive. His nurse said that they had strained the gold out of those bags in the lab...the pure gold!


He had his cells infused around 12:30pm...that infusion lasted 20 minutes. His nurse stood there and kept moving the bag...to keep the cells from clumping and then at the end she made sure that the bag was completely empty...so he would get them all! Then two hours later he had IL-2...his old "friend." And, that old friend treated him about the same as before. Exactly one hour after the IL-2 infusion, he started having rigors (uncontrollable shakes...or as I labeled them the last time..."the quakes." They lasted for a total of 30 minutes. He said later that he didn't think that they were as bad as the ones he had with his other IL-2 treatments...all I know is that his bed was shaking quite a bit!

Woody has asked for prayer that his fever goes away and that it not indicate a problem or be a show stopper. He was piled with blankets for a while after he got the rigors...so that might have helped his body temperature go up. It was 100.4 and was down to around 99 this evening before I left. They are doing tests on his blood to make sure that he doesn't have any sort of infection. All precautions are being taken since his immune system is about nil at this point.

I had a busy day...got up and did laundry before I went over to the hospital. This evening Woody's floor nurses provided a dinner for all the guests here at the Safra Family Lodge. His nurses have healing hands...and are very good cooks, too!

After supper, I went back to sit with Woody till almost nine and then I rode the shuttle back to the lodge. Woody was feeling better this evening.

If all is "go" he will have his second IL-2 infusion at 11pm.

Woody's Cells Don't Like Plastic!

About the first thing that Dr. Dudley told us on our tour of the laboratory where Woody's cells are growing is that his cells didn't like plastic...some cells grow well in the plastic containers they are supposed to grow in...but not Woody's...now the young lady who also has melanoma who toured with us...her cells LOVED plastic! The reason that Woody's cells were a bit reluctant to grow...sluggish the first time and just really slow the second time...and took lots of encouraging to grow. Dr. Dudley knew exactly what cells Woody was talking about when he mentioned that his cells were slugish...now Dr. Dudley has a face to go with the cells that he knows so well!

Woody has had a fairly good day. He got dressed mid morning and we came over to the lodge for about two hours...sat in the gazebo in the garden for a while and then sat in my room...hoping for the washer and dryer to be empty so I could wash (which never happened). Then we headed back to the hospital to await the chance of a lifetime...a tour where Woody's cells are growing!

I am late blogging tonight as Woody really wanted me to compose a collage of the pictures that I got to take today. I couldn't believe that they would let us take pictures...but we were encouraged to take them. Since I am so late, I'm not going to go into great detail...but will explain the pictures a bit by the number that I have on each picture.

#1 This doctor is working on a melanoma tumor that had been removed today (what they did to Woody's tumors). He is separating the parts that they need to grow the cells.
#2 This tube shows blood separated (like they did in apheresis)...They don't want the very bottom layer or the one on top of that one...but the next one up...darker color layer (I think).
#3 This is Woody looking at what the cells look like about two weeks after they start growing. I got to look too and saw a melanoma cell that still hadn't been destroyed.
#4 This is the young lady's cells that have been growing. She is at Day-7 (she will start the chemo tomorrow that Woody just completed). So her cells are 7 days behind Woody's in growth. The lighter substance at the bottom of these containers are her cells.
#5 This is the section where Woody's cells are stored...they are in some of the bags on the shelf...we think that 6 of those are Woody's cells. The bags show how much they have grown in 7 days!
#6 A very special moment...Dr. Dudley is handing Woody a bag of Woody's own cells!
#7 Woody holding his cells. His comment..."They are warm!"
#8 This is a vat where samples of blood of patients are stored for future study. You should have seen the puff of "smoke" that poofed out when he opened the lid (think movie set laboratory!) on this super cold vat.
#9 -168 degrees centigrade!!!!!!!!!!

Woody was able to eat some today...which is good as tomorrow is the BIG day...Day 0...he will start receiving his cells tomorrow around noon and will receive his first IL-2 a few hours later. Please be praying that he will tolerate this part...he had such a rough time with IL-2 before...especially pray that he won't have the rigors (shakes) like he did before.

This tour was absolutely wonderful...and as Woody told Dr. Dudley as we left the lab..."this gives me hope and every patient undergoing this here needs to go on a tour of this lab."

By the way the young lady who went on the tour is in the room right next to Woody's. So when we got back we stopped to talk and introduce ourselves...guess what...she is a patient of Dr. Sosman's! They live in Chattanooga. It really is a small world!!!!

Be sure to click on the collage so you can see more of the details in the pictures...for example...there are tweezers above the temperature in picture #9...that have frost on them...the doctor pulled them out of the vat.

The Counts are Coming Down

Better day...but not the best...which is to be expected. I "got" to do wash again today at the hospital...need I say more! Woody has no appetite and has been rather nauseated today...so really doesn't want to eat...I did get him to eat a small amount of yogurt today. The dentist came in today and reassured him that he was healing well...that was a relief to hear. One less thing to press on his mind. Tomorrow is Day -1...last day of the chemo. He will receive his last chemo tomorrow at 5 in the morning. They want the chemo out of his system before they start putting back his cells the next day. As the blog title shows his white blood count is coming down...which it is supposed to be doing. His fever was just about nil today...if he could just spend a little less time in the bathroom he would be happier! We are hoping that he will have a good night's sleep. He hasn't slept as much today. Someone from the pain team came and talked to him...I missed her as she came when I had gone back to the lodge to rest. She gave him several suggestions...including accupuncture! But at the moment, the neurontin seems to be helping. He definitely is in much less pain.

I managed to move from one room/floor to another this morning...so am trying to settle into the new room...I prefer the old one...oh, well...they are renovating it...reason for me having to move.

I finally saw one of the baby bunnies this morning and managed to get a picture of him. I love this one because it shows his cotton tail! Little Peter Cottontail nibbling grass!

End of a VERY Adventurous Day!

First off when I got to the hospital this morning...Woody greeted me with the fact that he needed washing done...one of the side effects of one of the chemos is diarrhea...need I say more...he was appalled that he had "gone through" so many pairs of underwear. So adventure #1 for me was to wash clothes at the hospital...I'd never done that before. They have a small laundry room with a washer and dryer and you just have to ask a nurse for some detergent. So I sat and read while I waited on clothes to be washed and dried.

Woody definitely isn't feeling very well. No energy, no get up and go...wellllllllllll...really that is about all he has done...get up and go! He still is running a low grade fever. They will be calling in the dentists in the morning to be sure that it isn't due to his tooth. I reminded Woody that he ran a fever with IL-2...he had forgotten that. Anyway...to say that Woody is feeling puny is an understatement. He has eaten next to nothing...I have managed to get him to eat some yogurt and that is about it. He was nauseated last evening after I left. Today he just has that nauseous feeling when they start passing out the pills! He is supposed to have a consult with the pain management team also tomorrow...I will say that his pain seems to be less now that he is on the neurontin...but then it may seem less since he has other issues that might be taking his mind off his pain!

Ok...next adventure for the "sick one's" wife! Here at the lodge there really aren't any strangers as everyone is pretty much in the same boat...a seriously ill patient who is in the hospital at NIH. Well, I talked several times to a lady from the Atlanta area who had flown up here with a friend who had kidney surgery last week. She was planning to go get a rental car this afternoon and she asked me if she could get me anything if she found a WalMart while she was out and about. We ended up meeting over at the hospital and decided that I would go with her and help her navigate back. What a trip! We are still laughing about it. We took the NIH shuttle to Dulles airport and got off just as a really bad storm blew up...but the Lord was looking out for us as we only got a few raindrops on us...and it had gone on by the time we got her rental car. She got the car and we were off!!!!!!!!! She was determined to find a WalMart...but where we were just wasn't a place for WalMarts. So we decided to at least try to find a CVS pharmacy...she knew where one was not too far from the NIH campus. Well, we started heading back to Bethesda...and we were on the Capitol Beltway...and on the part that Woody and I had traveled...so I was able to lead her right back to campus...only problem was...really there were several problems...when we got back and were going back to campus the way Woody and I usually go...we turned onto the street and a huge tree had blown down in the storm and was across the road we needed to be on. Uh-oh...now to find another way. About this time I realized that it was Sunday and...there is only one entrance that you can enter through on Sunday...and that was the entrance that Woody and I had never been able to locate on our last trip! So..........we drove around and around and around...Ann (my new found friend!) finally said that she felt like she was in a movie! I suggested the movie Ground Hog Day. Anyway, we finally found a gate where someone let us through...and we proceeded to head back to the lodge. What a day!!!!!!!!!!!! I am really glad that I went with her as she did need a navigator more than a GPS...we had one of those and we still went around and around and around! Oh, and in our round about way we did find the CVS that she was looking for...and my most important purchase was Charmin toilet paper...at Woody's request...what they have here is about like tissue paper and very poor quality tissue paper at that! I will miss my new cohort in crime after she leaves tomorrow!

Woody did ask that you pray about his tooth problem.

I doubt that tomorrow will be as adventurous...well...I do have to move to another room...so that should be an adventure...just one adventure after another! I took the sunset picture on my way back to the lodge. The sky was absolutely beautiful tonight after the storms...on the way back I heard chainsaws...sawing up that tree that blocked our way back!

And, last but not least...a big HAPPY BIRTHDAY to one of our blog followers...our grandson, Alex, turned 13 today...oh, my...another teenage grandchild!

Same song...second verse

Woody had the same two chemos today as he had yesterday. He has slept a good part of the day, which he needed as he was up so much last night. While he is on the one chemo...which he only gets two days...he has to void a certain amount every two hours round the clock...this a protective measure for his bladder. So not much rest for the weary! And, he has been getting up to go to the bathroom three or more times during those two hours.

He got a bit concerned this afternoon when his tooth started hurting some again and then he found out that he was running a slight fever...but doctors and nurses have "tried" to assure him that if it is the tooth that the antibiotic that he is taking will be on top of that infection. They feel that the fever is just part of the side effects of the chemo. I hope that they have reassured him enough so he can rest peacefully when he isn't in the bathroom tonight!

Tomorrow was supposed to be the day that I had to move out of the Safra Family Lodge for a day or so...but earlier in the week they told me that I have a room for all the days except for one. I was going to have to move to a hotel tomorrow...but I just found out that I will be able to stay here for the whole time...I will just have to move rooms on Monday...much easier (I think) to move rooms than to have to move to a hotel! After I blog, I will cancel my reservations at the hotel.

So summary report on Woody...he has finished one of the chemos...he has three days to go on the other one...which is the one that is supposed to be the easiest to tolerate. I think that the nursing staff thinks that he has done quite well. He hasn't been nauseated...just not hungry. They are trying to manage his pain a bit differently...treating it with a medication that nerve pain is dealt with...neurontin...I told him that we were now twins...as I take that for my Transverse Myelitis nerve pain.

I spent the day in Woody's room reading, embroidering, and watching Home and Garden channel and the Food channel. It is VERY hot here...still 92 as I type this. Tonight's picture is taken from the hill from Safra Lodge looking down on part of the NIH campus...looking at the side of the building where Woody is. It's a pretty easy walk to get there...but a bit of a climb coming back to the lodge! I am trying to walk it most of the time...there is a shuttle and I have only ridden it back to the lodge once. So I'm getting a bit of exercise each day as I usually make more than one round trip.

Baa Baa Black Sheep...7 Bags Full

This is how Woody's IV pole looked around 3:30pm today. The one with the bright orange label is the first chemo that he received. The first chemo took about an hour, then at 5:15pm he got the second chemo...that took 30 min. Woody asked me to remind all of you that these chemos are not being directed at his melanoma...they are being given to him to destroy his immune system. So far he has tolerated them...but he had decided to sit up for a while just prior to me leaving. He said that he could see how one at least felt like they could be nauseated...he "said" that he wasn't, but that he wasn't feeling exactly "right," either. At one point not long into the first chemo I thought that his face seemed red and he mentioned a little later that his face felt hot. He also said that he felt what the nurse told him that he might...pressure in his sinus cavities...he said that he had a slight headache. He ate a very light supper...and he has several things stashed away in a drawer in case he needs something to eat while the hospital kitchen is closed. So I guess we can say that he has gotten through the chemo for Day -5.

He will get both chemos again tomorrow and then after that just one for the next three days.

For the nurses and others who are interested...The chemos that he is getting are: Cytoxan and Fludarabine. The Cytoxan is really hard on the bladder...so...he has been getting extra hydration along with the chemo and just prior to getting the first dose he was given Lasix...he is spending a lot of time running to the bathroom...and...his nurses are to see that he goes every two hours all through the night! So not going to be the most restful night for him.

He was also given Mesna, a "rescue" drug that works to protect the bladder from baldder irritation which is a side effect of cytoxan.

His afternoon chemo nurse decided that he needed to see the pain management team...but she didn't realize how much pain he was having till it was too late to get them to come see him today...so they will be dropping in to see him on Monday.

I'm trying to remember if I told you all that Woody wanted me to tell in this blog...if not I'll add it on tomorrow. He has been thinking up the blog titles and telling me things that he wants me to mention in the blog.

The Two-th and Final Version of the Tooth Story (we hope!)!

Woody had a dentist appointment today at 9am. He "thought" that all they were going to do was look and make sure that the problem had been resolved yesterday. What "really" happened was that the young dentist called in a seasoned dentist to confer with. I sat in the room while they discussed back and forth what was best and what the real problem was. The older dentist said that he was sure that it was the tooth that had the crown. The young doctor continued to think that it was a problem in between the teeth or with the tooth on the other side. The older dentist took the dental mirror and thunked it on Woody's teeth and said that by the sound he was sure that it was the crowned tooth. The young dentist just knew that he needed to do whatever needed to be done and do it quickly. (Woody was considered an emergency case.) The word that the dentist used for Woody's team yesterday was aggressive...and he wanted to solve the infection issue to their approval and in their time frame! The young dentist wanted to remove the crown and work from there...the older dentist said that he might crack the crown and then have Woody's dentist upset with them messing up his work! It was really "almost" funny to hear them go back and forth! The older dentist wanted the crown to be drilled through and the infected part/parts removed that way. I left at a point...a dentist office isn't my favorite place and I really didn't want to watch. So I went to the waiting room...and watched the young and old dentist continue their discussion out in the hall! My prayer was that whatever was decided that it was what was needed to be done! In the end the young dentist did what the older dentist suggested and that was the right decision. He drilled in to find the root partially dead...so that was what was causing the problem...he got it out...did whatever needed to be done after and sealed up the hole that was drilled in the crown. As far as Woody knew, he had no deadening...and he said that it didn't hurt.

This afternoon his nurse came in and was talking to us about the next days and what to expect, etc. She did talk to him about the dental situation and she said that if it had gone untreated that it could have proved "lethal," as there need to be no infections in the body when these chemos and immunotherapy are being done. Woody had no idea that he had a tooth problem till two nights ago in the middle of the night...our thoughts are that it was a "God Thing." God saw to it that the problem showed up prior to Woody starting his chemo. Once again Woody is getting in just under the wire...he had two chances for his tumors to grow the cells needed...it took the second tumor...this chemo was supposed to start yesterday and take seven days for him to have two different chemos before he started receiving his cells...but they can double up and give both chemos over five days...but tomorrow the chemos must start as next Wednesday he must start getting his cells back...once again under the wire! Tomorrow is considered Day-5...next Wednesday is considered Day 0. So the countdown will begin tomorrow sometime between 11am and 1pm. I'll report tomorrow as to how his day goes.

Tonight's blog picture is of one of the residents living here at the Safra Family Lodge with me (at least on the grounds of the Safra Lodge!). I walked around the grounds this evening and spotted him when I was about to sit down in one of the gazebos.

The Tooth, The Whole Tooth, and Nothing But The Tooth...

Well, to tell you the tooth...this has been an interesting day. I didn't mention in last night's blog that Woody had had a problem with one of his teeth in the middle of the night. He was supposed to see a dentist yesterday afternoon, but wires got crossed. So he ended up with an appointment to see the dentist this morning. At his initial visit it was thought that he had a problem with one of his teeth that has a crown...and they felt that he probably needed a root canal...well, no time to wait to have a root canal at the moment...must deal with the infection that seemed to be there asap...as he can't start chemo with an infection. So chemo was put off for today and the immuno-docs gave the dentist till Friday morning to get things cleared up! He was started on an antibiotic and had to go back to the dentist this afternoon...for what was supposed to be a pulpectomy, a temporary crown/cap on the tooth, and whatever else was deemed necessary. When Woody went back this afternoon, the dentist poked around some more and decided that there wasn't a problem with the tooth...but that likely something had gotten stuck in between his teeth and had caused a bit of a gum problem. He poked around, etc. and then sent Woody back to his room with some mouth wash. Woody had to call the dentist at 8pm this evening to let him know how he was doing. Mouth-wise he was feeling pretty good...shoulder and arm he was having a lot of pain...as he had waited to take pain medication till it was time to talk to the dentist. Woody didn't want to mask any pain that was in his mouth with his pain medication. He asked for the pain med just a little before he called the dentist. He will go in to see the dentist again tomorrow morning. I think that the dentist is shaking in his boots that he has made the correct decision! He said that Woody's team of immunotherapists were aggressive.

So...chemo won't begin till Friday and he will be getting both chemo drugs at the same time now over a five day period. He was supposed to get one and then the other over a seven day period. But the doctors said that he wouldn't notice any difference (I told them that I was sure that he wouldn't, since he hadn't had them one at a time before!).

He wore his guinea pig shirt today and it got several reactions. Most thought that it was funny. One of his doctors said that he had an issue with it as he tried to make his patients not feel like guinea pigs! He got several smiles out of it and he enjoyed wearing it!

In between dentist appointments, Woody and I did walk over to the Safra Family Lodge so he could see where I am staying. Tonight's picture is the front of the lodge. This morning I walked around in the gardens at the back and took a few pictures.

So...a couple more days of respite for Woody. Chemo "should" start on Friday. They explained today that doing both chemos at the same time is the way that they used to do it...so it wasn't a problem. A nutritionist also came by to see Woody today. She was very helpful in explaining ways to help him from being/feeling nauseated...guess time will tell if they work for Woody.

Ignorance is bliss??

Woody's thinking is that the less he knows...the better. So he hasn't asked a lot of questions or read a lot about what is about to happen to him. He was really surprised this morning as to how involved getting the line put in would be. Probably just as well that he didn't know! He was put part-way to sleep...he had to be able to respond to them to do things like hold his breath when he was told. He had had a PIC line put in at Vanderbilt...so he figured that it would be a lot the same. Well...when he got back back into his room, he said: : "That was quite a procedure." He was given lessons in holding his breath prior to the procedure...because...if he didn't do it correctly it would cut off circulation to his lungs and that would be a medical emergency. He said that he didn't have to hold it very long. They took him to have the line put in at 9am and he didn't come out till 10:30am. I read a book that I borrowed from the Safra Lodge (where I'm staying) library. I'm enjoying it.

"Tonight" (guess really in the morning!) at 1am they will start running lots of fluids through him via IV. They have to hydrate him prior to him starting the chemo. Whether chemo starts tomorrow, as planned, will depend on whether the cell growth is where it should be at the point when they check them in the morning. They have to be at a point in growth that their growth will be at the right place next week when they start putting them back into him. The earliest that chemo will start is noon tomorrow.

He has taken advantage of a good appetite today and enjoyed choosing from the menu...probably lunch tomorrow will be the last time for a while that he will have much appetite.

Tonight's picture is a view from Woody's hospital room. It is the Children's Inn.

Rough road ahead!

Above 10,000 feet!

Above 10,000 feet is when you can turn on your electronic devices...so I could take a picture! We had a good flight. It had probably been pretty close to thirty years since Woody had flown. This was the first time that Woody and I had ever flown together. So a new experience!!! One of many new experiences for this trip...I am afraid! We had to wait for a couple of hours for the NIH shuttle to come for us. So we had a Subway sandwich and than sat near where the shuttle picks up passengers. I read a magazine for a while and I dozed a bit. We got to NIH and Woody went to admitting and I sat in front of the elevator that we take to his room...I watched the luggage...and we didn't have to lug it any farther than necessary! The bags were not light! As soon as he finished with admitting, we headed upstairs to get him settled in a room. He has a really nice private room...large and it has a pretty view. Guess who greeted us...his favorite nurse! She has him as her patient! She was very helpful in getting him settled. He went for lab work...happens pretty quickly when it is so late in the day. This is the first time that he has had a woman do his lab work. Her name was Ehilitu Adamu. When she made a call, she spoke in a foreign language. Woody asked her what language she had spoken and she said "Amaharic." I just looked it up and it is a Semitic language spoken in North Central Ethiopia.

After his lab work, I walked over to the Safra Lodge and got checked in. What a nice place...and that is an understatement! This time I am definitely getting more than I paid for something...since this lodging is free. It is just like being in a hotel...but with a more home-like atmosphere. I went back to Woody's room after getting checked in...he ordered his supper and I went and got a chef's salad. We ate in his room. And, then I came back to the lodge to see if I could get online so I could blog...very easily accomplished! So I am in for the night and Woody is ensconced in his hospital room. He will have the line put in tomorrow that they will put the chemo, etc. through. He can't eat or drink after midnight.

It's Blooming!

Our little Crepe Myrtle has finally decided to bloom...it was planted several years ago and yesterday Woody noticed that it was blooming...so a it is giving us a pretty send-off! We like the color!

I am just about packed...just the few last minute things to put in the suitcase. Melany got here a little while ago. She is taking us to the airport so she is spending the night since we need to leave so early in the morning.

Woody and I went to Sunday School this morning. He taught his class. Then we came home. I made a really good fresh vegetable medley...using up the fresh veggies that we had so they wouldn't spoil. It was really good...and Woody didn't seem to mind that I slipped in the rest of the eggplant!

Well, guess I will be blogging from Bethesda, MD tomorrow night. I plan to blog each night so you can keep up with how Woody is doing with this treatment...and, I will attempt to explain about this drug study as it proceeds.

Flutterbies!

Our butterfly bushes seem to be doing what they are supposed to do...attract butterflies. Every time that I look out the window there are several butterflies enjoying the nectar from these flowers.

Woody and I woke up at about the same time this morning...early for me...and a bit late for him. We went for a walk around a big "block" in the next subdivision. I have been trying to get things ready to pack...last load is in the washer. Woody finished a book, took some fallen branches out to the road, and has done crossword puzzles, watched a ball game, and in general taken it easy today. I made my "obligatory pre-trip" WalMart run. Now to get everything consolidated into two suitcases and a carry-on (and not have anything weigh too much!). We are allowed two suitcases each on Southwest...but I know that we don't need to lug that many bags onto shuttles and into the hospital, etc. I have lists made to hopefully keep from forgetting something important. Once all the clothes are washed and dried then I will start putting things into suitcases. I have charged camera batteries and the cell phone and put the chargers in my suitcase...so tending to the little things today...then tomorrow will complete the packing job!

True Identy!

Woody had this idea for a design on a t-shirt...so I got online and found a free guinea pig machine embroidery design and added the lettering. I stitched it out last night...so now Woody can declare his true identity while at NIH!

Woody got up early, went to work, worked, walked at lunch, worked some more, and came home to rest and relax and begin an extended time off from work.

Mid-morning I called "our" social worker to see if she was working on getting me reservations at the lodge. She had turned in the request yesterday and hadn't heard back. She said that she would call before day's end...and I did get a call mid-afternoon saying that I had reservations for some of the days...the first 6...then there are 4 that they don't have a place for me...then I can go back for the duration of his stay. There is a chance that I will be able to stay if someone cancels...so time will tell. If I can't stay there those four days, then I will stay at one of the hotels that had a shuttle to and from NIH. So I have a place to lay my head for most of the days.

The interesting thing was that our research nurse put in for me to stay at the lodge July 19 through August 15 (ummmmmm that is more than three weeks)...so guess time will tell how long we will really be staying in Bethesda.

Dear friends brought our supper this evening...YUM!!!!!!!!

On the move!

And he's off...Elijah decided to start taking more than one or two steps at a time tonight after supper...several times he took seven or eight before he plopped on the floor. We ate over at their house this evening. Not long after supper, Elijah decided that it was great fun to start taking steps...he would walk a few steps and then laugh and laugh...at times he was laughing so hard that it was hard for him to walk! I had to go home to get my camera (what was I thinking of not taking it when we went over to eat?!) so I could try to capture a step or two. He will probably be running by the time that we get back home from our next trip to NIH.

Speaking of being on the move, it looks like we will be on the move bright and early on Monday. One of the NIH travel agents called this morning. He made Woody's flight reservation and then called me back with the flight information so I could call Southwest and make my flight reservation...we did get on the same flight! I haven't heard from the social worker about my living arrangements. If I don't hear tomorrow morning, I will put in a call to her. So at the moment we both have one-way tickets to Baltimore/Washington International Airport. From there we will hop on an NIH shuttle that will drop us off at NIH. Woody will get admitted to the hospital and hopefully I will have a place to stay by then!

Woody got up early, went to work, worked, didn't walk at lunch, worked some more. He said that he "just survived!"

Home!

We got home around 6pm after driving 570 miles today. Good to be home...if only for a few short days! Tonight's picture is one of the unique water towers along our driving route between Tullahoma and Bethesda...I'm making an educated guess...that this town produces apples!

No message on the answering machine from NIH...so guess we'll hear tomorrow??? I will proceed with getting ready, as if we are going on Monday...they don't seem to see any reason for planning too far in advance!

Woody is resting in his recliner...glad to be home!

What a long day!

We got to NIH a little after 7am and didn't get away till 5:30pm. Looks like things are on a roll. It took almost five hours for the apheresis...they were taking white blood cells out of his blood...these will be added to the cells that are growing to make them grow even more. He ended up having to have another MRI today of his liver. They see a very small place on his liver...it may have been there all along and not be more than a cyst...and even if it is melanoma it won't be a show stopper. It took forever for the MRI as some of their machines weren't working so they got way behind. He first had an appointment at 1:15, then 2:30 and finally 4pm. And the 4pm didn't get underway till around 4:30. He was through at 5:30 and we headed out the door as quickly as possible. While waiting for the MRI appointment we got to see the research team. I'm still processing what we learned...mainly that we will just get home and practically turn around and go back. He is to check in on Monday (19th)...have a port put in on Tuesday(20th)...and the chemo will start on Wednesday (21st)...that is if "things" go as they said today! After the MRI is read tomorrow, they will put him in the protocol that he qualifies for and will call us (leave a message as we will be on the road)...once it is officially in their computers, then I will have to call the travel agency that NIH uses and make flight reservations and be in contact with the person who is supposed to try to get me in the family lodge. He will be in the hospital for at least three weeks this time. Let's just say that the "big bad stuff" is ahead for Woody.

We left in rush hour...it took us 1 1/2 hours to go 32miles. Plus the heavens opened up and we had some pretty hard rain for a while. We have stopped in Strasburg, VA for the night.

Rainy Day in Bethesda

Pictured above is the smallest hydroelectric plant in the United States. We saw this on our drive yesterday along the Blue Ridge Parkway.

We got up really early and headed out really early...Woody wanted to get to the phlebotomy lab before all 8am appointments appeared. We have been at NIH for lab work at 8am and it us usually covered up. We got to NIH so early that the gate that we usually go in was still closed. We tried to find the other gate but were never sure where they wanted us to go...so we drove around...found a place to park and sat for a while. We were the second car through the gate once it opened at 7am...but there were already 20 people ahead of him at the lab when we got there. He had a lot of appointments that said that he could go "whenever" so we fit those in when there was a free moment or two. He had lab work, EKG, chest x-ray, CT scan and MRI of the brain all finished by noon. We also checked about travel vouchers (He is supposed to be reimbursed so much per mile for our trips to NIH after the first screening trip...and we hadn't ever been told how or where to do this.). So in one of the free times we got the form and found out how to do it. Before we left we found the elevator that we are to take in the morning to get to his first appointment. Then we got our car and headed away from NIH.

We stopped on the way back to the hotel at a speciality grocery/deli and got some "good eating" for lunch. We brought what we got back to our room and ate lunch in our room. Woody has rested after lunch...taken a couple of naps actually. We are now down in the lobby as our room is being made up. It has been pouring...glad that we got everything done at NIH before it started raining...though it was really humid as we were waiting for our car to be brought to us...and the breeze had picked up by the time we came out of the deli...so we could tell that rain was on its way.

We are just planning to take it easy here at the hotel this evening...crossword puzzles, TV, reading, resting, etc. We will probably try to get the car partially packed tonight, as we will check out in the morning before we go to NIH...and his first appointment in the morning is 7:30am for apheresis...which could take as long as five hours! Then hopefully we will be able to grab a bite to eat before we meet with the immunotherapy team. Hopefully after that meeting, he will feel like heading down the road a piece toward home to find a place to put our heads for the night.

So I will be posting from someplace between Bethesda and Tullahoma tomorrow night.

We have arrived!

We arrived here in Bethesda around 6:30pm Eastern time and have settled into our hotel room. We had a very pleasant leisurely drive today...we drove part of the way on The Blue Ridge Parkway...lots of lookouts...so lots of stops along the way to "look out" and take a few pictures...plus the speed limit is 45...so you don't get very far, very fast. It was rather hazy out over the valley...plus it was mid day...so not the best time to take pictures. We were driving along the ridge of the Blue Ridge Mountains...so the mountains in the distance in the above picture are the Alleghenies. It probably reached 90 today...but the humidity has been low...so very pleasant.

Woody was glad when we got here so he could plop and rest. He is up in the room resting while I came down to the lobby to blog.

Tomorrow we head to NIH bright and early...lab work, CT scans, MRI of the brain, EKG, chest x-ray, etc. Hopefully it won't be too long of a day.

The Taurus has landed...

...landed at least for the night. We have had a good travel day. It is still a beautiful drive...but a bit drier than last month. We have had an uneventful travel day...a very good thing. At one of the rest stops, Woody got out of our car and was walking down the sidewalk, when someone said "hi, Woody." It was someone from his work...a small world! At another rest stop there was a line about 50 deep waiting for the ladies' restroom...all of a sudden one of the ladies left the line and it looked like she went to the men's restroom...but there was another ladies' restroom. Watching from the car we weren't sure what was happening...and there was a gentleman who really looked confused when the ladies started heading toward the men's restroom. The reason for so many in line was a tour bus...they were heading to Cape Cod.

We started around 9:30am and got here at 4:30pm central time. At times it seemed like we were just going on vacation...but then reality would set in...and I would realize where we are heading! Woody seemed to do well with the drive, but I think that it wore him out more than he would admit! He dozed for a while after we got settled in our room. We drove 350 miles today...stopped at Fort Chiswell, VA...the same place that we have stayed twice before. As we got off the interstate and headed toward the hotel, we decided that it was "deja vu, all over again!" The temperatures are quite pleasant here with low humidity. It has been a very pretty day...blue sky, big puffy clouds...no rain...nice day for a drive!

Now to see if I can relay...what I thought was hilarious in the middle of the night...I think that one had to be there to see the hilarity of the situation...and, to be me...and not Woody. Woody got up and stubbed his toe on the bathroom door...even though he had the light on. Now, that wasn't all that funny...he really did hurt his toe. What got funny was our conversation after it happened...Woody said in a very pitiful voice that at least he had taken pain medicine before he did it...that he had planned ahead very well for stubbing his toe (or something to that effect). Well, at that hour in the night, I got tickled and got to laughing. I laughed so hard that I then couldn't get to sleep...and kept chuckling over his comment. And, he kept saying that it was all my fault...because I hadn't kept him from doing it! It really wasn't funny...and he is limping today.

We have been given a handicap hotel room...maybe we need it...perhaps they saw him limping in to register!

So...there you have our adventures of the day (and night!). We should be in Bethesda tomorrow at this time. I have changed my watch over to Eastern time so we will be on time for appointments on Monday and Tuesday!

Gettin' ready!

Woody got up early, went to work, worked, walked at lunch, worked some more, and then came home to rest and relax in order to get ready for the long trip ahead of us. The last couple of days, Woody has been doing something new to hopefully help with his pain...he has tried the heating pad on his shoulder where he had surgery. It seems to have helped some..at least he hasn't had that time of intense pain that he had been having.

I ran errands this morning. This afternoon and evening, I have been getting things ready for the trip. All the clothes are out on the bed...I just have to open up the suitcases and put things in. It was really hot when I was running errands. I usually park well away from the stores...I figure that is part of my exercise for the day...well...today I sort of wished that I had parked closer...it was so very hot when I came out and had to walk back to the car and then take the cart back to the cart rack! We had rain after I got back home...so it turned form hot to very warm and very steamy...now that the sun has gone down...it's not too bad outside.

Back to packing! I'll blog from somewhere along the road to Bethesda, MD tomorrow night.

"Knit Together"

Tonight's blog picture is of some art that was hanging on the walls at NIH. I took some pictures to show Kathy, as she loves to knit. I had pretty much forgotten about taking these until I was going through papers we need to take to NIH and papers we can leave here (from the stack from the last trip)...I found the print-out about these. There was a series of these on one wall (called the East Alcove Gallery). The artist is Rania Hassan and she calls the series "Knit Together." Here are her words describing this intriguing form of art. "This series started because of my fascination with knitting, love for painting and intrigue about the community I discovered with knitters from around the world. I think about how it links me to my mother, her mother and all the generations of women who came before them. We're all connected somehow."

Woody got up early, went to work, worked, walked at lunch, worked some more, and came home to rest and relax. He hasn't had a time of intense pain today that he had the afternoons previous...a good thing! He has gone out to water some of our plants. These extremely high temperatures are drying things out pretty quickly.

I have spent the day at home trying to get organized for our next trip that is looming all too near. I have gotten quite a lot done today. Tomorrow I will run errands and continue to get things ready to pack and then get things into the suitcases. Soon we will be singing..."On The Road Again!"

Things are getting serious!

When I called Woody to tell him that we had gotten the schedule for this coming Monday and Tuesday, he said that it sounded like things were getting serious. Monday he is scheduled

to be at NIH at 8am. He is to have lab work, CT scans, MRI of his brain, chest x-ray, and an EKG. Then Tuesday he is to report to Apheresis at 7:30am. I had to look up "apheresis." Here is the definition that I found: "The process of apheresis involves removal of whole blood from a patient or donor. Within an instrument that is essentially designed as a centrifuge, the components of whole blood are separated. One of the separated portions is then withdrawn and the remaining components are retransfused into the patient or donor." So it is like giving blood...but after it is taken out and spun around and what they want is taken out, then it is given right back to him like a transfusion. I continued to read about this process and why it is done. I think that they are using apheresis for stem cell harvesting for Woody. The article that I read said that the small number of circulating bone marrow stem cells can be harvested to be used in transplantation procedures. Woody doesn't remember this procedure being mentioned the first time that we talked to the doctors at NIH, but I do remember...I had just forgotten about it and don't remember them calling the procedure by name...as it hadn't been mentioned to us again until today's email. This procedure can take up to five hours. At 1:30 Tuesday afternoon, Woody is scheduled to talk to the doctors in the Immunotherapy Clinic. Then I guess we will be free to head home.

Woody got up early, headed to work, worked, walked at lunch, worked some more, and then came home to rest and relax. Once again, he had a really rough time with pain about an hour after he got home.

As soon as I got up, I headed to the computer to attempt to make hotel reservations...once again (definitely not my favorite thing to do!). I will say that it was easier this time...though some how when I got the confirmation by email, they had made them for Sunday and Monday and not Monday and Tuesday as I had requested. Shortly after I discovered that error, I found an email from the research nurse that said that Woody had things scheduled early Monday morning...so it all worked out...we did need them for Sunday and Monday. So I didn't have to change the reservations!

Guess it is time to get the suitcases out...AGAIN!

Adventure, Haute Couture, A Phone Call, & Birthday Fun!

Busy, busy day! Woody got up early, went to work, worked, walked at lunch, worked some more, and then came home to rest and relax. I got up early, got ready, and drove to Melany's...that is an adventure for me...who doesn't like to drive out of town. After getting to Melany's and looking around at their gardens, Melany, Erin, Alex and I piled into their vehicle and headed to Nashville to the Frist Center for the Visual Arts. They have a Victoria and Albert Museum of London exhibition: The Golden Age of Couture: 1947-1957. So I was in my element getting to see Christian Dior, Coco Chanel, etc. garments...lots and lots of them. Alex will tell you how many...he was ready to leave long before Melany and I were. Erin was fine with our length of stay...she looked at the exhibit and then went upstairs to the hands-on-art room and got some water colors and painted a very pretty picture. I drove the scenic route both ways...but only took two pictures...one on the way...the slow-down due to road line painters...and one on the way back...again the road was blocked...two vans of people stomping out a fire. Erin's cat, Hayden, climbed into my bag while I was there and I got his picture, too.

I got home and flopped down on the couch in the family room. I was telling Woody a bit about the trip. Then asked him if we had heard from NIH...I thought that he said "no." Guess that was what I was expecting to hear. So I then asked him if he had checked our answering machine...he then said he guessed that I hadn't heard him! The NIH doctor (a new one) called and left a message here and then called him at work. She told him that the cells are growing and that we should start planning to come to NIH next week...the research nurse is to call us with more details. This will just be to have baseline testing done...then come home to go back at a later time.

Shortly after I got home, Nathan and the children came over here to tell us that it was about time for Elijah's birthday party. He'll be one tomorrow...doesn't seem possible! When it was time for the party, Woody was hurting pretty badly...so he stayed behind till his pain medication took effect and then joined us. Elijah enjoyed his cake and balloons and all his presents. I really think that his brother and sisters enjoyed the party as much, if not more! They do love parties!

So thus comes to a close a very busy day...I'm ready to rest and relax!

Monday Holiday

Woody got up really early (4:30am) and went for a walk. He walked to Kroger's and back (about 8 miles). Then he did a lot of resting the rest of the morning. We ate fresh veggies for lunch...corn on the cob, yellow squash, and egg plant...the latter was for me...not Woody's favorite. Woody has watched a DVD and rested some more this afternoon. I made Pasta Primavera for our supper...I haven't had any yet...decided to blog first! I did a little sewing and also worked on some of my photos. I would say that it has been a rather lazy day once again.

4th of July 2010

We went to Sunday School this morning. Woody and I both taught our respective Sunday School classes. We came home and have been pretty lazy the rest of the afternoon. We both watched one of the DVDs that we checked out at the library yesterday. Then I started getting sleepy and ended up taking a long nap. Woody continued to watch DVDs and finally found one that put him to sleep...so he has napped a bit too.

Saturday...all day!

Woody got up early and went for a walk...about five miles...for those in Tullahoma...he walked from our house to the Dairy Queen and back. Later in the morning, he and I went to the library. He got to hurting quite a bit...but I don't think that he has taken pain medication today. BUT...he has "rested" a lot in his recliner after lunch...and ended up going upstairs and taking quite a long nap later in the afternoon. Shortly after he woke up I headed over to Nathan and Kathy's to watch four of the five...Woody joined me after he got awake enough! Nathan, Kathy and Graham rode their bikes to pick blackberries. This morning they went to a blueberry farm and picked blueberries...I just took a blueberry dump cake out of the oven. The four grown-ups are going to have a treat as soon as I finish blogging...the children will get some tomorrow. The cake smells so yummy! I hear fireworks popping all around us.

One yearly goal met!

Woody collects children's literature. In particular, he collects Newberry Award and Honor Books. BUT, he doesn't buy them...he just reads them. He is now up to date again...having read all the Newberry Award and Honor Books since the award's inception in 1921. He finished the last of this year's four award winners this morning before he went to work, went to work, worked, walked at lunch, worked some more, stopped on his way home at the barber and the fruit stand, and came home to rest and relax and enjoy the long 4th of July weekend.

No word from NIH...

TIMBERRRRRRRRRRR pictures

Don't know why they didn't post last night! I'm trying again! They were there when I posted...but then they were gone! COMPUTERS!!!!!!!!!

TIMBERRRRRRRRRRRRR!

We have had quite the day of excitement around here...yesterday water heaters...today trees...never a dull moment! The neighbors (Nathan and family) and we had some trees taken down today...very tall trees. The bucket truck could go up 60 feet...and it was extended its full height for both of the trees and trees were still taller. It is sad to see them go...but we have lots more. One of the trees was dead and the other one was hollow at the base of its trunk. It was quite an education to watch the workers take them down...at times branch by branch and at other times big pieces of trunk at a time. Graham was interested to see that they used ropes like pulleys...he has learned about pulleys with K'nex...and today he saw real ones in action. We watched the stump grinders, chain saws, big trucks and smaller trucks go in and out of our yards, logs being dropped into a big dump truck, branches being ground up, and ever so much more...very good entertainment! We stayed out most of the morning watching them. It was a really nice day...it probably did get up to 90 but the humidity was lower and there was a breeze.

Woody got up early, went to work, worked, walked at lunch, worked some more, then came home to watch a few more branches come down and the clean up after the tree fellings! We sat out on the front porch for a while. Then we went in for an early supper, since we were going to babysit tonight while Kathy and Nathan had a "date night." We just got home...reason for the lateness of the blog.

No word from NIH. It is three weeks today since Woody's surgery.