Friday, April 30, 2010

Respite Day 61

Woody got up early, went to work, worked, walked at lunch, worked some more, came home to collapse in his recliner! He was in pain, but took some pain medication and the pain eased up some.

I went to the grocery store to get a few things to get us through the weekend and also some more fruit and snacks for the road (hmmmmmm seems like I just said that in a blog...oh, I did just last Friday...I can't believe that we are getting ready to head off again!). I came home and had helpers (Graham, Abigail and Joy) to carry the groceries in the house. They stayed and all helped me in one way or another with the cooking that I had planned to do this afternoon. They enjoyed the strawberries that I bought at the store, too! Then a little while ago, I headed off to get my hair cut. Last week I rearranged this week's hair appointment for next week and wasn't going to be able to go next week either. So she squeezed me in today...thanks, Jody! While I was away, Woody did a little mowing. We have storms coming.

Thursday, April 29, 2010

We'll be on the road again...

...come Monday. We made the decision today to drive to Maryland for this coming week's return trip to NIH. Woody got up early, like usual (glad to be back in his routine), headed off to work, worked, walked at lunch, worked some more, and came home to rest and relax. He has been in pain this evening.

I spent the day waiting on phone calls and making plans for our next trip. The Fellow returned my call this morning and gave me the information that I needed. He also said that Woody should come in to the clinic when we get there on Tuesday and be admitted...but not to stay. By doing that we are eligible for the lodge that is on campus for families (the patient already has to be admitted)...good thing to know. So when the social worker returned my call, I was able to ask her to find out if there was a room available. She checked on that for us and called back to say that we could stay for the first two nights that we are there...but there wasn't an available room(at this time at least) for the other two nights. This is free lodging provided by NIH (the government). Woody and I will both be staying there on Tuesday evening and then I will be staying there Wednesday night by myself. I also found out that when we do fly that we will be getting our tickets through their government travel agent (the only way to get reimbursed for part of the ticket). We will be reimbursed at government rate for the miles we travel to and from NIH, also. Later in the day, I talked to the research nurse and found out when Woody has to be at the clinic/hospital for the preop stuff. The social worker told me about a nearby hotel that has the best rates and also a shuttle to NIH. So I then made reservations for the other two nights at that hotel, which is only about a mile from NIH. I will be staying there Thursday night by myself and then we will both stay there on the night that Woody is released from the hospital.

I will say that I have discovered that the orientation meeting that we missed was something that is needed...lots of information that I gleaned today from the social worker that I should have learned on Tuesday. I plan to ask if I can sit in on the orientation this coming Thursday (if it works out with Woody's surgery time), since they have them on Tuesdays and Thursdays. (We missed our orientation due to computer problems at Woody's registration.)

Now that I have all the above done, I guess it is time to start packing again! So we can once again travel across the rolling hills of TN (pictured above) and VA and onto the beltway of MD.

Wednesday, April 28, 2010

Home again, home again...

...but for how long? While we were en route home today, we got a call from both the Fellow and research nurse assigned to Woody at the moment. Somehow we missed both calls and I didn't realize that we had messages till we were almost home this afternoon. By the time I tried to return the calls, it was too late in the day, due to the time change, for them to be answering their phones. So I left messages with the doctor, the nurse, and also with the social worker we didn't get to see yesterday. The doctor's message: Woody has been scheduled for surgery next Thursday, May 6th. He needs to be there in the morning on Wednesday, May 5th for preop stuff. So it is suggested that we be there Tuesday, May 4th. Hmmmmmm not even unpacked and already planning a return trip.

The plan is to use Woody's Melanoma tumor/s that they remove during this surgery to grow more cells. If these cells grow then Woody will go on to the next step in the protocol. It will take around 2-3 weeks to see if the cells grow. Then if they are growing, they will let them grow a couple of more they want billions of these cells. (We will be at home, while the cells hopefully grow.)

If the cells grow successfully, then they will be bringing Woody back to NIH and giving him chemo that will come close to destroying his immune system...just before it gets totally destroyed, they will start to give him back the cells that they have grown from his tumor and they will also give him one round of IL-2. Then his immune system is supposed to start building back up. That hospital stay will be around three weeks.

In a nutshell...that is what "may" be happening over the next several months, barring any show-stoppers.

Not going to concentrate on the big picture for the time we have to figure out logistics for next week! Waiting till after I talk to NIH folk tomorrow before we make any decisions as to how, when, and where we get there, etc!

The above picture is only part of the front of the main building on the NIH campus...that's Woody sitting on the bench waving (lower right hand corner).

Guess I'll go unpack...maybe!

Tuesday, April 27, 2010

End of a long day!

Our day started in traffic...LOTS! It took probably 45 min. to go 11 miles. We got to NIH and unloaded suitcases, laptop, etc. to go through x-ray machines...just like an airport...we passed, items passed, & car passed. We drove on up to the front of the BIG main building...used their free valet parking. We got there five minutes before we were supposed to be there...but at that point things stalled out. It took 1 1/2 hours to get Woody software problems. It meant that we missed our meeting with the social worker (so I still have lots of unanswered questions). Woody saw a nurse, got x-rayed, EKG'd, & 13 vials of blood drawn. We ate lunch and then went back upstairs to see two doctors, a Fellow and an Attending Physician. The Fellow really knew Woody's case...he was a very good communicator.

The Fellow left us to go review the CDs of scans that we brought with us. When he came back in, he brought the Attending Physician and a research nurse. Remember me saying that they review all the cases the following week and then get back with us...well, when they walked back in they were discussing surgery (ummmmm what about being approved by all the docs on Monday?)...this wasn't future surgery...but they were going to try to schedule surgery this Thursday (as in the day after tomorrow!). Once they discovered that Woody was the driver, they sort of changed their minds and suggested that we could put it off till...NEXT WEEK! So probably Woody will be having one of his tumors removed next week if all goes as we left it this afternoon. They still had to check with the surgery team (they were in surgery...what a novel place for them to be!) The Fellow is to be contacting us tomorrow...tentatively the surgery day is next Thursday.

Once the docs were finished with us, we were free to go. But had one stop to make before leaving the building...we were issued picture id badges that are good for a year (those papers were given to us early on in the day...looks to me like they knew all along that he would be approved!). So we should have an easier time entering the NIH campus after this...supposedly no car inspection, etc. We will see...all too soon.

The doctors said the reason they don't have to wait till next Monday for a decision is that there were just NO signs of a "show stopper" at this point.

After we got the badges issued we got our car and headed on down the road toward TN. We travelled 200+ miles before stopping just a little north of Roanoke, VA for the night. I will explain more tomorrow about what Woody will be facing...not an easy road ahead for him.

Monday, April 26, 2010

On to Maryland

We have had a very pleasant drive today. The countryside in Virginia was just beautiful...low hanging clouds over the Blue Ridge rolling hills...cattle grazing...old metal bridge...Shenandoah Valley. So far Maryland has been anything but rural! We were able to navigate through the maze of streets (thanks to Map Quest and our GPS) and find G Street Fabrics and Bobby's Crabcakes. So Woody and I are both happy. The fabric store was of the ways that I judge a good fabric store is if I can find exactly what I'm looking for in a very short time...and I was able to do that...and then, of course, I had to peruse the store a bit more slowly. Woody walked through the store, walked around the parking lot, and than sat for a while in the store while I shopped. After "working up an appetite" fabric shopping, we headed to Bobby's Crabcakes. It was located in the refurbished downtown area of Rockville...lots of shops and restaurants with loft apartments over the businesses...a very quaint setting. We shared a crabcake platter...we each had a crab cake and Woody ate the coleslaw and I (with Woody's help) ate the fries. Very good! After eating we walked around the block to check out the area a bit and then headed back to our car. It was a bit chilly and threatening to rain. We then headed on to our motel in Gaithersburg. So we are settled for the evening...waiting for Dancing With the Stars!

We will head out to NIH early in the morning. We are to register at NIH between 8:30 and 9am. We are about 13 miles away from NIH. We will be in rush hour traffic. And, we have to go through vehicle inspection and whatever else the government says we have to do before we can enter! As a reminder: NIH is a part of the Department of Health and Human Services. So I'm not sure what time we will need to start.

Tomorrow I'll report on our NIH experience (I hope), after we stop for the night.

Sunday, April 25, 2010

Just a Sunday Afternoon Family Drive!

I don't know about you and your families...but, when I was a child, our family often piled into our car on Sunday afternoons and went on what we called a "Sunday drive." One of the roads that we used to take took us past orange amongst one of the groves was an orange juice stand...mmmmmmmmm fresh squeezed orange juice on a warm Arizona afternoon. Another took us past fields and fields of flowers being grown for florists.

Today's Sunday afternoon drive wasn't exactly as idyllic as those of years gone by...for one thing, it was much longer than those we went on when I was a child...yet it really was a very pleasant drive (at least, when we weren't entirely surrounded by trucks!). We saw absolutely beautiful scenery...Tennessee is such a beautiful state to live in and today we saw quite a few hundred miles of very green! Then we drove on into Virginia...another beautiful state. And, we weren't surrounded by trucks all the time...the time we had the most trucks was when "our" interstate route (I-81) ended up being the detour route for I-40...then we had LOTS of trucks as seen in the above picture.

We have travelled 366 miles today...if Map Quest figured correctly, we are more than half-way to our destination in Maryland...a little more than 300 miles to go. It was VERY windy today. Woody said that it didn't really bother him when he was driving. But, when we stopped at an overlook and at a rest stop, we about got blown away when we got out of the car!

We are settled in for the night. We plan to get up in the morning and have breakfast here at the motel and then head on down the road...fabric and crab we come!!!!!!!!!

Saturday, April 24, 2010

Stormy Day

We have had several storms pass through today...have had some rain and some wind. Around 2pm our lights went out for a minute, came back on and then went out again. I heard something but wasn't sure what I had heard. Woody said that something had fallen and went out to check to see what it was. I was just hoping that it wasn't a tree in our yard. It was a tree that fell...just not in our yard...but mighty close...a tree in the yard of the house that is directly behind Nathan's house. It fell over the street as you can see. The driver of a truck that was coming along as it fell had to put brakes on quickly to keep it from falling on the truck. Our street was one of the detours. When Woody came back in, he took Graham out to see what was happening. Then when Graham and Woody came back, Graham took me out so I could take some pictures.

Not exactly the best day to be getting ready to head off on a trip! The lights have gone off several times. It has now started to rain and thunder again. Just before the rain started up again, I was hearing the chain saws cutting up the tree. I decided to blog now as stronger storms may be coming our way as the evening progresses. We have been under a tornado watch most of the day.

Woody got up early. He has finished up the wash that he started yesterday. We both went over to Nathan and Kathy's for breakfast...strawberry rolls (like a cinnamon roll...but with strawberries). Very good...not too sweet...which I liked. After we breakfasted, Woody and I went to the library, to Auto Zone for new windshield wipers, and then stopped at the grocery store. Woody got a cookbook at the library that had a yummy looking recipe...Penne and Asparagus with Ricotta Cheese. We had fresh asparagus that we planned to cook today so decided to try this recipe. We needed a couple of the ingredients...thus the stop at the grocery store. I made the recipe for lunch and it was very good.

I have typed up a list of Woody's medications to take with us. Woody has printed off maps of TN and VA with their counties marked on them. We always play the license plate game...looking for as many states as we can find on a trip. TN license plates also tell the name of the county so we are going to see how many counties we can get from TN. We don't know if VA license plates have counties...but have the map in case! I think that he also printed off an alphabetical list of all the states so I can check them off when we see that state on a license! Very important part of getting ready for a trip around here! I still haven't gotten the suitcase out of the closet...but have started putting things that need to be packed on the guest bed. Maybe we'll be ready to leave after Sunday School tomorrow! That is our plan at least!

I will attempt to blog while we are away...but there is always a possibility that we won't have Internet service. We'll try to keep you posted about our adventure! The "plans" are to travel Sunday and Monday and then Woody will be screened at NIH for a good part of the day on Tuesday. If we are through at a decent hour, we will probably start heading back toward TN after his screening. Time will tell. Woody challenged me to find a fabric store which I'd like to visit...not a problem...found one that I had always wanted to go to. Woody got on the computer last night to find a place to have crab cakes...which he wants on this trip...and he accomplished that that's two things that we are planning to do beside going to NIH!
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Friday, April 23, 2010

It's Friday...another day closer to NIH

Woody got up early, went to work, worked, walked at lunch, worked some more, and then came home to rest for a few minutes before he headed out to do some mowing and other yardwork. He is now relaxing (deeply) in front of the TV. He got to hurting a while ago and I think that he took a pain pill and that is why he is in a rather deep sleep at the moment.

I made my traditional "before-a-trip" run to WalMart today to pick up some fruit and other snack items to have in the car. I have done several loads of wash today and Woody has done a load of wash this evening. Activities around here point to a trip in the near future...all too near!

Nathan and family have been away for more than a week. They pulled into their driveway a few hours ago. I had just finished cooking our supper and I heard one rap on the door. I answered the door and found Joy on the other side. Later she was joined by Abigail and Esther. A little while ago, I called for Compost Boy to come to the rescue. I saw Kathy from afar and saw Nathan when he mowed their yard. So the only one still holding out on seeing us is Elijah. Guess I'll see him in the morning. Woody and I have been invited to breakfast at their house.

Thursday, April 22, 2010

Mission accomplished!

Woody got up early, went to work, worked, walked at lunch, worked some more, and then headed off to Vanderbilt to pick up the CDs of his scans. He got home from Nashville around 5:30...and thus another step closer to being ready to head to NIH. He is now relaxing in his recliner in front of the TV.

It has been sort of a lazy day for me...not much accomplished...did make a reservation for a place to stay Monday night in Maryland, started making a list of things that we need to take with us, worked a little on cleaning up my sewing room...but didn't make great strides in that direction.

I did find out today that it is possible to overnight FedEx something to us. Woody received an information packet from NIH (Bethesda, MD) today that had been overnighted to us yesterday. So...perhaps Woody could have been saved the trip that he made today to Vanderbilt...but I still think...better safe than sorry!

Wednesday, April 21, 2010

Another day closer to NIH

Woody and I both woke up quite early with the same thought on our minds...we need to take a time line of Woody's surgeries, studies, etc. So a little after 5am I started making a list on the computer...the blog was a really big help! Woody also has a calendar at work where he writes down when he takes off for we were able to go back several years and get closer than just the years on a couple of his melanoma related surgeries. We know that they will want a medical history and that is so hard to recall when "put on the spot" when the doctor is asking specific questions. "Maybe" we will have most of the important ones and their dates on this list.

Woody went to work, worked, walked at lunch, worked some more and then came home to work some more out in the yard. He doesn't do a lot at a time so the yard is an ongoing project for him!

I worked on "the" list to take with us, cleaned some more...this time our sunporch and laundry room. So the downstairs has had a fairly good cleaning. I'm down to just two upstairs rooms to go in my cleaning spree. "Maybe" I'll put forth the energy tomorrow on one or the other of those.

I also spent time on the computer emailing back and forth with our Vandy research nurse. She emailed me that the CDs of the scans were ready to pick up. I had to find out about the slides that we were also supposed to get. But we won't have to get those. She had faxed the NIH research nurse all the pathology reports from Vandy, Murfreesboro and Tullahoma. Now the NIH nurse will track down the ones that she needs and get the slides. She won't need those slides while we are there this time. At one point the Vandy nurse considered FedExing the CDs to us overnight...but I questioned if they would really get here over night. My only other experience with overnighting something...took more than 48 hours to get to its destination (that was by Post Office and from Tullahoma not to Tullahoma). But we decided not to take the chance and Woody will head Vandy way after work tomorrow to pick up the CDs. It took several emails to make sure that we understood where exactly she was going to put them for Woody to pick up! Once those are in hand, that will definitely be one step closer to heading to Bethesda.

Tuesday, April 20, 2010

A smoother sailing day!

Woody got up early, went to work, worked, walked at lunch, worked some more, and came home to do a little mowing and raking. He is now resting in his recliner watching the news.

Around 10am I got the phone call from the research nurse at NIH. The first trip to NIH is only for one day...a screening day. Woody's screening day is set up for this coming Tuesday (April 27th. I got all kinds of information from the nurse as to where to be and when. After I got off the phone with her, I typed up the information that I had made notes on while we talked. I was afraid to trust my memory for very long about what the abbreviations I'd used meant! It ended up being almost a full page of typed notes. I also went online and printed off a map of NIH and all the rules and regulations just to be able to enter NIH...remember this is a governement facility. Of course nothing can be "totally easy!" Before we go to Maryland, we have to go to Vanderbilt to pick up a CD of Woody's most recent brain, PET, and CT scans. They also want us to bring 15 unstained pathology slides from Woody's previous surgeries. I have turned the gathering of these items over to our Vandy research nurse. There may be a problem with the slides as most of Woody's surgeries were done in places other than Vanderbilt and for some reason the research nurse didn't think that the bone tumor was what they wanted. She is checking with the NIH research nurse.

So a trip to Bethesda, MD is now on the calendar...but for this time a very short trip. The NIH doctors meet each Monday to review the people who have been screened the prior week. There will be a decision made that day as to whether Woody is qualified for one of their research studies. We will be called after that meeting to be told of their decision.

Monday, April 19, 2010

Respite Day 50: A Day of Fodder for the Blog!

Oh, my...where to begin! I guess at the beginning! Woody got up early, headed to work, worked, walked at lunch, worked some more, and then came home to mow and do some other yard work. I got up a bit earlier than Woody as I didn't sleep all that well, still due to my eyes. But I will report that they feel close to normal this evening.

A little after 8am, I made my first call to the medical records office at Harton Hospital to see why Vandy hadn't received Woody's stress test report. The person that I talked to today told me that someone from Vanderbilt needed to call her to get the test results. I told her I didn't understand, when I had been told Friday that they were being faxed as I talked to them in medical records. But I didn't want to rock the emailed our research nurse at Vandy and gave her the phone number to medical records. She shortly emailed me back that she got no answer at that number and wondered if either Woody or I didn't need to go pick them up and get them to her at Vandy. She also mentioned in her email that the orders Vandy sent stated that the report was to be faxed to Vandy. I wasn't ready to give I called back to the medical records office (took 4 or 6 calls to get through to her...strange message about when their hours were...not that the line was busy and please hold...or to please call back later, etc.) and finally I got through to her again. I reminded her that the original orders were from Vandy and that the orders said to fax results to Vandy. With that reminder, she seemed more receptive to sending the records to Vandy. So I gave her the Vandy research nurse's fax number AGAIN. But she wanted more than the fax number, she also wanted a phone number so she could call Vandy. It took me a bit to find the number and I had to call her back with the phone number. She put me on hold till she got back to wherever she needed to be to write the number down! When we finished that conversation, I hung up under the impression that she was going to take care of sending and/or calling the information in to Vandy. So I emailed our research nurse telling her that she should be get a call and/or get a fax shortly. An hour later, our nurse emailed back that she still had nothing. I called Woody to try to figure out who to call next at Harton. He decided to call the number for the administrator. He talked to someone in the administration office who immediately put in a call to the person who did Woody's cardiac stress test. The person in cardiac testing explained that she had a little earlier discovered that the test had never been read by the cardiologist (it was still in the doctor's inbox) and she had gotten in touch with the doctor. And, that the results had just gotten to them and that the test results would be faxed to Vanderbilt within the hour and if they weren't for us to call them back. Woody relayed this information to me and I emailed the research nurse again and told her to expect them and that if they weren't to her by noon, we were to get in touch with Harton again. At 11:43, the research nurse emailed me to say that she had received them and that she had faxed them on to NIH. BUT, when they finally got faxed to her, a page was missing and she had to call to get Harton to send a complete report!!!!!

I will say that a little after noon, I got the nicest call from the person who ran Woody's stress test. She was very apologetic and said that if there were any other problems about the report to call her. She was quite upset with the doctor...the report had been in his inbox since Wednesday. Oh, well, the task got done...just not easily and none too promptly! Before it got done I had received nine emails from our Vandy research nurse and I had replied to her emails about the same number of times. I had made two phone calls (plus the 4 or 5 unanswered calls). The Vandy nurse had made one unanswered call and then the one to get the full report. And, Woody had made one call. And, I am still wondering why the medical records person told me on Friday that she was faxing the results as we talked...since there was no report to fax! But it is all behind us now!

I have since had a couple of emails from the Vandy research nurse. One of which said that she had talked to the research nurse at NIH. The NIH nurse is supposed to call us and arrange for us to be there NEXT week! So far we haven't heard from NIH. I did ask our Vandy nurse if she could tell us if he had passed the stress test. She said that it looked fine to her. And, I figure that he must have passed, if they are making plans at NIH for Woody to be there next week! Oh, my...what a day! I just "need" to know how long a stay at NIH to plan for...maybe we'll know that tomorrow???

To be continued!!!!!!!!!!

Sunday, April 18, 2010

Spring Sunday

Woody went to Sunday School and taught his 6th grade boys class. I didn't go this morning as I had an eye problem in the night...I think that I have a dry eye problem due to my allergies and my allergy medications. three o'clock in the morning I was awakened in pain...both eyes were in pain and the pain lasted longer than it sometimes does. I immediately started using my saline eye drops and have used them throughout the day. The right eye got to feeling better pretty quickly. But the left is still bothering me...everything is blurry looking out of that eye. I'm thinking that all my involvement with dust and debris on the front porch yesterday didn't help! I have cooked this afternoon...more liquid gold for the freezer--this time chicken broth. And, I made a marinated bean salad and a chicken salad. I am thinking about making a potato salad...trying to decide if I have enough energy. But if I do, then we will be set for meals for a day or two!

There are days that I almost forget that Woody is yesterday, but today he has slept a good part of the afternoon and he is having quite a bit of pain in his arm and shoulder area. He probably had a bit too "normal" of a day yesterday! And, I know that I disturbed his sleep, when I cried out in pain so early this morning. He has tried to watch a couple of DVDs that he got at the library yesterday...but I think that he slept through a good portion of them.

We received an email from our Vandy research nurse. She was sitting at her desk at Vanderbilt in front of her fax machine...and there was nothing from our hospital. So I have to call them again in the morning.
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Saturday, April 17, 2010

Y'all come an' set a spell!

Woody finished painting the porch rails this afternoon (just in time to go in and watch a baseball game on TV). After he finished, I got the porch cleaned up. We needed to blow debris off the porch and neither of us knows how to use our leaf used the vacuum cleaner as a blower. Worked pretty well...more than one way to skin a cat! It's all cleaned up now and ready for any of you to stop by and "set a spell." It's delightful "porch-sitting" weather!

Woody got up really early this morning. He walked his 12 mile route. Later in the morning he went to the library and ran an errand for me. Then he took up his paint brush and got busy finishing the you can see there are quite a few spindles and all aren't in the picture. After finishing the rails Woody headed in to watch a baseball game...which was still going on the last I checked...into extra innings.

Friday, April 16, 2010

Friday...All Day

Woody got up early, went to work, worked, walked at lunch, worked some more, and then came home to paint and do a bit of gardening...and then he got to relax. Woody and I just walked around our yard and Nathan's checking out what is growing. Then we walked around the block...a short I got my walking in doing the grocery shopping. I am still working on getting everything back where it goes in the house. Today I concentrated on the coat closet in the family room. It is a deep closet and there are shelves at the back and it is nice to be able to walk up to them! It tends to get so you can't see the floor due to all the "stuff" that gets put in is the place recycle items get put (paper, tin cans, milk jugs, cardboard, etc.). We have weekly curbside recycling for certain things. It is amazing what can accumulate over a week's time...and that closet floor usually proves how much, even though we try to put the items in grocery bags. So today I bought some containers that we can put recycle items in and not have the closet get so over run. Now we will see if my plan works. After I blog, I will work on it some more.

Harton Hospital has slowed things down (we're not all that surprised!). Harton didn't fax the results to Vanderbilt yesterday. So this morning our Vandy research nurse emailed us asking us to give Harton a call and request that they fax the results of the stress test to Vanderbilt as soon as possible. I even had to provide a fax number (now I know that they had one (at least at one time)!). The girl at Harton said that she was faxing the results as we spoke. Anyway, the last that I heard from the Vandy nurse...she wasn't at Vanderbilt today...she was going to try to get one of her co-workers to look at the fax and tell her the results. No further email from her, so we probably won't know anything till Monday at the earliest now.

Tonight's picture is of a cherry tree that is behind the old coke plant (now Cokers). It had been topped pretty severely, but the topping didn't stop the was covered with blooms...some blooms were growing out of the trunk. The blooms were huge.
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Thursday, April 15, 2010

A Taxing Day

Woody got up early, headed to work, worked, walked at lunch, worked some more, and then came home...again...not to rest and relax. The car we had worked on this week had its "service engine soon" light on he had to call them and then take the car in again. He figured that it would probably be worked on while he waited, but I ended up having to go get him. He then came home to paint some more on the front porch rail...he got through with another section. After going back to pick up the car, he is now resting and relaxing for the evening.

I had lunch with a friend at a unique cafe here in Tullahoma. It's called Sweet Aroma Cafe and is housed in the old Coca Cola Plant. There is coke memorabilia all through the building now called "Cokers."

It has been another hot day here in Tullahoma...I saw 89 deg. F on one of the bank signs when going through town this afternoon and Weather Bug says that we got to 89 deg. F must be so! It is still quite pleasant as we still have relatively low humidity(for us). The pollen is still thick...we need some rain to settle some of it. I don't know if it is the heat or what...but I have taken several naps this afternoon and evening...I sit down and find myself falling asleep.
We haven't heard anything from Vanderbilt today about Woody's stress test results. I don't know if we will hear from Vandy or NIH next. There is that niggling in the back of my mind...when will we be heading to Maryland and how long will we be there and what will Woody be facing, etc. Woody is at peace with not knowing! I want to know!!!!!!!!!!

Wednesday, April 14, 2010

All stressed out!

Woody went all prepared (running shoes and all) to do a treadmill stress test...but he had a drug (Dobutamine) induced Echo Stress Cardiogram. They got his heart rate up to 133, their goal. Woody said that the hardest part was laying on his "bad" arm. I guess there was some confusion about the doctor's name who had requested this test...Dr. Puzanov...he wasn't in Harton's "system" and they didn't know how to spell his name...Woody called me and we got them headed in the right direction with close enough to the correct spelling that they found him. We got an email a little while ago from the Vandy research nurse. She was concerned as to whether Woody had been given the stress test...I guess Harton didn't have the needed doctor's signature. Our research nurse at Vandy had to explain to Harton Hospital that Dr. Puzanov had been in a skiing accident and that he was in the hospital and not there to fax a signature! (It sort of sounds like a "dog ate my homework" excuse!) I don't know why Dr. Sosman didn't figure into this picture. He must be away, again. Woody asked the tech if "he'd passed." Of course the techs can't say much...but she did say that she didn't see any problems, but that a doctor would read the test in the morning and send the report on to Vanderbilt. So now we wait to hear from Vandy and NIH. Our research nurse is off till Monday, but she said that she had left instructions for co-workers to send her the results when they arrive at Vandy. She told me that she would get the information on to the NIH research nurse as soon as she finds out that his stress test results fit within the parameter of NIH's requirements for the drug trial that they want for Woody. Oh, by the way, the tech at Harton told Woody that the reason that they didn't do the treadmill stress test was "cost." The stress test that he had today cost 1/3 of what a treadmill stress test costs.

Woody slept in a bit later this morning since he wasn't going to work. He headed off to the hospital a little after 8am and was home before 11am. He worked on the tedious painting of the spindles on the front porch. He wishes that he had gotten farther...but that is really "slow-go" painting.

I want to share a cute story about the above is Abigail with a wonderful find for a child...a bird egg! She, Joy, and Esther brought it over to show to me. They were so excited. At first they tried to find the nest that it had fallen from so they could put it back. Then, when they couldn't find the nest, they decided to make a nest for it (She had me get a bird book so they could look at nests!). Abigail was talking about raising the baby "chick." She talked about when it would be a teenager and when it would be six months old, etc. It was just so cute to listen to them plan the future of this little bird!!!!

I gave Abigail, Joy, and Esther their jumpers and matching tops today...another project completed! We just picked up our car that was in for some things are heading back to "normal!" Back to "normal" just in time for the next disruption...perhaps NIH?!?

Tuesday, April 13, 2010

Respite Day 44

Woody got up early, headed off to work, worked, walked at lunch, worked some more, and then came home to take up a paint brush to paint some more of the front porch rail. I got up...feeling very free since I didn't have to wait around for any workers...only to realize that I couldn't run errands because the car was in the on to "plan B" on getting the house back to normal. I worked some more on the family room and then attacked the dining room (a lot of family room stuff had been stored there). So got everything out of the dining room that didn't belong (and back to where it did) and then gave the dining room a good cleaning.

Woody will have his cardiac stress test in the morning at Harton Hospital. Then I guess it is wait to hear from either Vanderbilt or NIH.

Monday, April 12, 2010

The BIG day!

The work on the house that was being done by contracted workers is complete! Hooray! We still have painting to do on the outside trim...but we are doing that we find time. I completed the second coat on the trim around the front door. Then I opened up the blue paint and painted our house numbers and also the little table that we have on the front porch. It was a beautiful day to be outside...but the air is absolutely full of pollen...hope that I don't pay later for being out so much today. After I finished painting, I put the porch back to the way it is supposed to be...and used the dust mop to "try" to get the pollen off the chairs. You should see our cars...they are a green-yellow from all the pollen.

Woody got up a bit later than usual and headed off to work. He worked, walked at lunch, worked some more, and then came home...but not to rest and relax. He had an appointment to take one of our cars in to have some work done on he drove there and then walked home. He has done some work in the yard...and ate the first of the radishes that he planted.

Tonight's picture is the first of our Lilies of the Valley to bloom...we should have lots more blooms as the season thing that we don't seem to kill in our yard!

Sunday, April 11, 2010

Superb Spring Sunday!

Woody and I went to Sunday School. Woody taught his 6th grade boys class. After we got home, we had lunch and I got started on a new soup recipe...Tortellini Soup, an authentic Italian recipe from The Hill district of St. Louis. Thanks to the York's for sharing the recipe! Another really good soup recipe to add to our soup cookbook. After I got the ingredients prepared for the soup and before I started it simmering, Woody and I took a walk...the longest for me this season. I was glad to get back to the house for a drink of cold water and to collapse on the couch. I will admit to dozing for a few minutes before getting busy on the soup again. The soup was ready for our supper. Woody watched basketball this afternoon. As soon as I post this, I'm going to attempt to get back to sewing the t-shirt tops to go with the girls' jumpers.

Saturday, April 10, 2010

She said that she was painting!

Woody took the picture and chose the title and the picture for tonight's blog. comment! Well, one little comment...note that I do have the blue painter's tape in the hand that is holding the cell phone. And...if Woody took the picture...he wasn't painting at the moment either...was he?! We really have worked hard today...both of us! As soon as a little of the chill left the air we both headed out and started washing the woodwork that we needed to paint...porch rails and the woodwork around the front door. I took door detail and Woody took the porch rails. Once the paint store opened, we headed to get our paint. On the way home we stopped at WalMart to pick up a couple of things that got left off the grocery list yesterday. Then we headed back home to finish washing things down. When we got home, I took a little time off from paint detail so I could get a pot of vegetable stock simmering. It simmered for close to four hours while we painted, etc. It really smelled good every time the door was opened or we had to go in for something. After lunch, the painting got underway. I have the first coat on the wood trim around the door and Woody is well underway with the porch rails...not easy painting all those spindles! He isn't as far as he might be, as he watched a baseball game mid-afternoon and only painted during the commercials! And...he is giving me a hard time for calling my sister and asking her for her help! Too bad that she is in AZ and we are in TN, as she really does like to paint...I can take or leave painting! It was nice to listen to the birds singing while I painted. It was a beautiful spring day...a nice day to be outside.

Friday, April 9, 2010

"Almost" a red-letter day

The outside is complete except for the workmen picking up some of their equipment and supplies...and for Woody and me painting the porch railings and around the front door (We plan to buy some paint tomorrow and put on our painters' hats!). The handrails got installed today...not easy drilling into brick...but the job got done. The touch-up painting got done inside, but the threshold to the garage is still causing a dilemma...guess he will think on it and come back with a fresh idea on Monday. The carpet installer called today and asked if he could come back on Monday rather than today to put in the transitional metal pieces that go in the doorways to the kitchen and sun porch. So..............."maybe" Monday all will be finished and be the actual red-letter day. I have been working on putting things back where they go today..."maybe" one of these days we will have the house back to normal. I am really pleased with all the work that has been done.

Woody got up early, went to work, worked, walked at lunch, worked some more, then came home to a worker in the house. I left Woody to "supervise," while I went shoe shopping with three of the neighbor grandchildren. It was the 7th traditional trip to our local shoe store to buy a first pair of shoes...little nine-month-old Elijah was the recipient this time. He seemed very accepting of the new foreign objects that were put on his little feet! He is starting to pull up on things and starting to do a bit of cruising around furniture. He seems to be doing this a bit earlier than his siblings...but he does get a lot of encouragement and help from his siblings! When I got back from the shoe shopping jaunt, the workers were gone for the day and Woody had gone for groceries...he made stops at both WalMart and Kroger.

Yesterday evening Woody went to sleep in his recliner sometime between 6 and 6:30pm and finally woke up at 10pm and went straight up to bed and slept the whole night. The unusual thing is that he hadn't taken any pain medicine during any of that time...not even Aleve. When he was sleeping so soundly, even when I was clunking around cleaning up the kitchen, I figured that he had taken some of his pain medicine. But he hadn't...guess he was just really tired. Hopefully those extra hours were just the peaceful kind of sleep that he needed.

Thursday, April 8, 2010

Respite Day 39

Here's a picture of one of many who breakfasted in our front yard this morning...a white-throated sparrow. This has been a big day...the siding on the house is finished, doors have been cut off and rehung, and Melany had a BIG birthday and has made me feel rather old...I can't believe that we could possibly have a daughter that old...but I'll be nice and not tell her age! Happy Birthday, Melany!
Woody got up early as usual, headed to work, worked, walked at lunch, worked some more, and then came home to have to interface a bit with the workmen both inside and outside. Once they left, he picked up the scraps of aluminum so they can be recycled. Then he came in to eat supper and rest and relax. I spent the day cleaning, cooking, and doing a bit of putting things back in the family room. I still can't put everything back as there are several places where there is going to have to be some paint touch-up after the carpet installation. The garage threshold still has to be addressed and we are still to get hand-rails for our front steps. The work is definitely winding down...and I am soooooo ready to have our house be ours again and get it put back to normal.
The Vandy research nurse emailed us information about Woody's cardiac stress test. It is scheduled here in town next Wednesday morning. I guess after that test is read and the results given to NIH, then we will get underway with finding out more about the "when, what, why, and where fors" of the study at NIH...of course that all is dependant on Woody doing well enough on the stress test to be a part of this study.
It's chilly again...must be one of the many "winters" of TN. I'm guessing that this must be "dogwood winter" least the dogwood tree in our front yard is blooming. It has been a beautiful day.

Wednesday, April 7, 2010

Computer, Carpet, Confusion

Carpet is installed...well, most of the way. Siding is almost finished...maybe tomorrow. The end is in sight for all that has been happening around our house. Today has been a very confusing day...workmen here all day...the last left a little before 7. The carpet is down...but all the doors in the family room need to be fixed to be able to open and close again. A door problem in that room is a bit of a nightmare as there are five tonight four of them are off the hinges. I just thought that the family room would be finished once the carpet was down! They are to come in the morning to figure out what to do with the doors and the threshold (which they had already fixed) of the door into the garage.

Woody got up early, went to work, walked at lunch, worked some more, and came home to try to rest and relax. The problem with him being able to rest and relax was that his recliner wasn't accessible and the carpet installers still had a ways to go to get the carpet down. He sat on the front porch for a while and then did a bit of gardening. He was very happy when his recliner got moved back into place and I found his pillows!

I heard from the Vanderbilt research nurse today. She said that Woody would be able to have the cardiac stress test at our local hospital. She will get the appointment set up asap.

It is good to have the computer working correctly again. It wasn't a very difficult problem...thank goodness. And...I like the guess all the confusion of the day was worth it! (The blue that you see in the picture is the pad not the carpet!)

Tuesday, April 6, 2010

Computer woes

I am blogging from Nathan and Kathy's today as we took our laptop to the shop to try to fix what ails it. Woody got up early, went to work, worked, walked at lunch, worked some more, then came home to rest and relax. I spent a good part of the day working on trying to solve computer problems and finally gave in to take it to the computer shop after Woody got home. I did check email before we took it and did get information from our research nurse at Vandy. NIH needs a cardiac stress test prior to us that has to be set up...we are hoping that it can be done here at the Tullahoma hospital...we will have to wait and see what the nurse has to say to that. The NIH research nurse did send a protocol number, but it doesn't sound at all like what Dr. Sosman described. All this to say that it looks like the ball is rolling in the direction of Bethesda, MD and NIH.

Monday, April 5, 2010

Where did Spring go?

According to Weather Bug, Tullahoma got to 90 degrees F today...what happened to pleasant spring days? Seems more like summer! Woody got up early, went to work, worked, walked at lunch, worked some more and then came home to rest and relax. This evening Woody and I walked around in the yard checking out some of the things that he has planted...and to see which the rascally squirrels have dug up! Then we sat on the front porch glider for a while and watched a flock of these little birds, chipping sparrows (I think).

Sunday, April 4, 2010

Resurrection Sunday 2010

Woody got up early and walked what he calls his "Sunday morning walk." This route is about 4 miles. We both went to Sunday School. Woody taught his 6th grade boys' class. We came home and ate lunch, rested a bit, and then went on a short walk. Woody has been watching TV and DVD's this afternoon and evening. I got up early and finished Abigail's jumper before we went to church. This afternoon I attacked the office/school room. It isn't going to get quite the cleaning that the guest room did...I just don't have it in me. It is just about ready to have school in the morning. Woody has had a headache today...he thinks due to not getting enough sleep. I'm wondering if we will hear from our Vandy research nurse tomorrow. I have asked her to get the protocol number for the study that Woody may be entering at NIH. I would like to read more about it. Plus with the information that they give about the actual study, they sort of give a time frame of when things happen. Not knowing is bugging me...but not bothering Woody at all.

Saturday, April 3, 2010

Cherry Blossom Time in Tennessee!

It has been a pretty "normal" day around here (as in not a lot happening!). Woody got up a bit later than he usually does on Saturday. He didn't walk due to a front that was about to pass through. Later in the morning he ran errands, went to get a few groceries, and went to the library. He has watched a couple of the DVDs that he got at the library and also watched basketball this afternoon and evening. Due to the storm that was passing through this morning, I didn't want to turn on my sewing machine so I got busy on the guest room...putting it "back to rights." What a job! I was hoping to say that I was finished with it when I blogged tonight, but didn't meet that goal. I will confess I didn't finish due to a nap that I hadn't put in my plans! Woody and I took a short walk late this afternoon. When we got back, I told Woody that I was "so tired." He told me to go sit down. Well, I did and the next thing I knew it was dark outside and past time to blog! But the guest room is coming together. And, hopefully ("maybe") before I go to bed tonight it will be finished. I am also close to finished with Abigail's jumper, but never got back to my sewing machine after the storms passed through.

Friday, April 2, 2010

Good Friday!

It looks like we will be heading in new directions in treating Woody's Melanoma. Dr. Sosman suggested that we pursue two options neither of which are at Vanderbilt. He wants Woody to be screened at two being the National Institutes of Health in Bethesda, MD and the other being Thompson in Knoxville. The top choice is NIH in Bethesda and Thompson being sort of a back-up if he doesn't get very far in the NIH protocol. Our Vanderbilt research nurse has already sent Woody's records to a research nurse at NIH. Our Vandy nurse says that they like him at NIH because he has lots of readily available tumors for growing cells. Dr. Sosman says that after approval at NIH, the first thing that will happen there is a resection (removal surgically) of at least one of Woody's tumors...probably the one under his right arm. Then they hope to grow up T-cells from his tumors. If those cells do grow/expand, he will be given chemo directed at his immune response (think that means that they will be "killing" his immune system) and then they will reintroduce his own T-cells that have hopefully grown from Woody's tissue. There will also be radiation and IL-2 involved in this process. Dr. Sosman said that all this was "IF" Woody continues to respond during the process...that "things" could be stopped anywhere along the way...lots of red tape to go through there...or so it sounds. Woody was tissue typed when he went for x-rays last week...and his tissue is the type that they like to work with.
NIH is the largest hospital that is totally dedicated to research. It is part of the Dept. of Health and Human Services. To look up things about NIH you go to
Dr. Sosman wants Woody on a list in Knoxville so that "IF" he has a show stopper down the road at NIH, he will be ready to start up there. He would have infusions there of Ipilumumab every 3 weeks, then a break and then every 12 weeks. Dr. Sosman indicated that this treatment hadn't started up yet in Knoxville, but the research nurse said that it had already started.
Anyway, at the moment the ball is at least rolling in the direction of us going to the Washington DC area. Vicki said that once Woody is accepted into the NIH program by the head of that program that it won't be long till we will be headed that way. Well...I had been wanting to go on a trip!!!!!!!!! Let's just say "ADVENTURES AHEAD!"
The latter treatment (Knoxville) "is coming" to Vanderbilt but not a treatment that they have at the present.
About the tumor in his leg...there is a minute tumor in his left femur above his knee. The one that they were concerned with is in his right tibia just below the knee. Doctor Sosman says that the x-ray showed that it was scarred bone rather a bone that was ready to fracture. The important thing for Woody was that it IS ok for him to walk...and that I can quit "tsk-tsking" him in the blog (and in person)! Woody mentioned "why not remove that tumor" and the doctor said that it would mean a total knee replacement...Woody let the idea of that surgery drop really quickly!
My brain is on overload so some of this may not be exactly correct. I'll correct things, as we actually start down this next path in Woody's treatment.
Dr. Sosman wants Woody to explore outside of Vanderbilt's doors since he continues to be in such good shape/health for someone being so sick/having Stage IV Melanoma.
I'm sure that I will be making all this more clear when it is more clear to me!

Thursday, April 1, 2010

We're hanging in there...

...sort of like this squirrel! We have quite the acrobats at our bird feeder...of course I would rather have birds...and we do have some...but these rascally fellas seem to think that it is mainly for them! Woody got up early, went to work, worked, didn't walk at lunch (proud of him!), worked some more, and then came home to rest and relax. He, again, is in quite a bit of pain. I think that he must have taken some of his pain medication as he was sleeping pretty deeply for a while. I sewed again today. Esther's jumper is finished and Abigail's is underway. I made Cream of Reubin Soup this afternoon...yum!
The excitement for the day came, when one of the siding workers rang the doorbell. They wanted me to know that one of our dormers was infested with wasps...oh, boy! So I had to call an exterminator. All the exterminator did was spray and said that he couldn't guarantee that they would all be gone...another oh, boy! I think the workers plan to come armed tomorrow with those cans of wasp killer that you can spray from a distance! I have one of the wasps in the house...but haven't managed to corner it to where I dare swat at it! At the moment I don't know where it is.
We will head off to Vanderbilt in the morning (so what else is new?!). This will be the third trip in twelve days for Woody. We are going to drive to Murfreesboro and then let Melany take over the driving. She has the day off because it is Good Friday. I am sure that we will be bombarded with all sorts of information to sift through and perhaps make some decisions. I don't know if a final decision will be made by the time we depart from Vanderbilt or not. I'll let you know tomorrow night how our day goes and what, if anything, has been decided.