Tuesday, March 31, 2009

Tuesday update

Woody did go to the radiologist in Tullahoma today. They talked to him, scanned him and marked him. He will go for a PET scan on Thursday in Manchester. After that the radiologist's office will get back with Woody to set up times for his radiation treatments.

The radiologist says that Woody will have to have 15-20 radiation treatments. Twenty is double what Dr. Sosman and Dr. Holt said that he would be having. So I have put in a call to Dr. Sosman and also emailed Dr. Holt to make sure that 15-20 are ok and that that number will work out with the schedule that Dr. Sosman has in mind for the scan that he has planned on April 21. Also we are checking to make sure that whatever dyes they use for the scans are ok since his kidneys were compromised with the IL-2. I just want to check to make sure that something isn't done that shouldn't be! I didn't go with Woody today and hadn't realized that he would have any scans so didn't think to mention to Woody to ask about dyes, etc. When they scanned him today they weren't able to use the dyes so in my opinion that was a good thing!

Dr. Sosman's nurse did call back this afternoon to get specifics to ask Dr. Sosman, but we're waiting to hear back to get our questions answered. At the moment I am a bit uneasy, but hopefully Dr. Sosman and Dr. Holt will be able to put my mind at ease.

With work and with his radiation appointment Woody was a bit weary this evening and dozed off and on. He's still itchy--but not quite as bad as he has been. His stiff neck is mostly gone today.

Monday, March 30, 2009

Monday update

Well, another work week is underway for Woody. He said that it was a rather long day and that was mainly due to the fact that he has a stiff neck. He thinks that he got it from sleeping in the recliner. He has decided that he is going to start sleeping in the bed again where he will get better support for his neck. He is still itchy...but the basil tea does help at least for a while after it is dabbed on itchy spots.

Woody has an appointment with the radiologist in the morning (Tue. Mar.31). We will see if our insurance will accept radiation this long after his surgery. The radiologist in Nashville indicated that it may be a problem as the protocol is to have the radiation soon after removal of a cancerous tumor. Woody couldn't have it at that time since he was going in for IL-2 treatments. So now we will see if insurance will allow him to have it two months after the surgery. I'll report what he finds out in tomorrow's blog.

Sunday, March 29, 2009

The way it was...

I have been doing a lot of thinking about the way things were prior to Woody's bicycle accident and his melanoma recurrence. This past week (March 15) was the six month "anniversary" of his bicycle accident...so guess that has had me doing a bit of thinking back over the past six months and also about times prior...doing some comparisons...and some wishing that we could go back in time and skip what we have just been through! I guess wishing for "the way it was!"

I mentioned in one of the earlier posts that I really do like to cook. And Woody likes me to cook as he really likes to eat (except at his sickest over these past six months). One of the things that I really don't like to do is clean up my cooking messes! Well, years ago Woody told me that if I would cook, he would clean up my cooking mess! Worked out very well...I did what I liked to do (the cooking)...Woody got to do what he liked to do (the eating)...and then he did what I didn't like to do (the dishes) which he claims that he actually enjoyed doing (I can't imagine!). And, by the way, he did all the dishes by hand. The dishwasher was only used by me. And, when the dishwasher was used, Woody usually helped me by putting away the clean dishes.

Well, all that changed six months ago when he became one handed/armed. I can still remember coming home from the hospital after his surgery on Sept. 15 sometime between 9 and 10pm. I had a rather messy kitchen awaiting me because Woody missed his "opportunity" that day since he had his accident around 4:30pm. So there I was looking at our kitchen...rather overwhelmed...rather tired since I had just waited several hours in a hospital waiting room with absolutely no one around since it was after hours in "sort of" a small hospital (especially when I compare it to Vandy--don't think that I would ever have been in a waiting room alone at Vandy!)...then had sat with Woody an hour or so after he was brought back to his room...even though tired, I was still very keyed up...so I decided to tackle the kitchen. I loaded everything possible into the dishwasher. Then I was faced with what couldn't be washed in the dishwasher and what wouldn't fit into the dishwasher. I'm not sure how long it took me into the night, but eventually I got the job finished. And, I was determined after that to stay on top of the messes and not let the dishes accumulate!

All that to say...the dishwasher has been a "saving grace" (using that term loosely) for me and had never been utilized in our household correctly prior to Woody's accident. Load the dishwasher...run it...empty it...start filling it up again as you dirty dishes...counters keep fairly clean! Imagine! Very simple!

One of the ways that I can tell that Woody is feeling some better is that occasionally I will find that he has emptied the dishwasher for me...and that happened more and more frequently this past week. So my kitchen co-worker is slowly returning--even though still one handed/armed!

By the way applying the "basil tea" to his itchy places seems to be working pretty well. Woody slept fairly well last night...he slept in the latest that he has in a very long time.

Saturday, March 28, 2009

The proof!

Now do you see why Woody can't have his arm/wrist operated on for at least a while? Be sure to click on the pictures to make them big...then you will have no question! Dr. Sosman says, "no surgery till he stops peeling." And it hasn't happened yet as you can see!

We have learned of some more possible itch relief remedies. Thanks to those who sent email suggestions! The one we have tried so far is basil tea--you steep 1/2 oz. of dried basil leaves in 1 pt. of boiling water in a covered glass jar. Put the lid on and let it cool to room temperature. Then apply it to itchy places with a cloth. Basil contains high amounts of eugenol, a topical anesthetic. We grew the basil and dried it last year so had plenty to try this "home remedy." Thanks Graham, Abigail, Joy, Kathy, and Nathan for helping strip the leaves off all that basil! We certainly didn't expect to use it this way! I will say that Woody smells a bit like spaghetti sauce(as do my hands)at the moment...we just tried some on his back. I just went to check and he said that it helped! Praise God!

I think that he has had a pretty good...I would say...almost normal Saturday. Now...if we could just have some of these itch remedies to work...then he might get to feeling really good! We're still open for suggestions!

Friday, March 27, 2009

Itch remedies, anyone?

Woody is still itching. It seems like we have tried just about everything under the sun to help him to stop...but so far to no avail...well, it may be a little better...but a little isn't enough!

Here are products that we have tried: issued by the hospital: 1)Eucerin cream and 2)DermaSarra steroid free anti-itch lotion (these two automatically issued for IL-2 patients); since coming home we have used up the Eucerin cream that they issued and have bought a 3)generic Eucerin cream (the nurses stressed that the cream was better than the lotion for dry skin); 4)a generic Aveeno daily mositerizing lotion with natural colloidal oatmeal; 5)a generic benedryl anti-itch cream; 6)a generic hydrocortisone 1% anti-itch cream; and he has taken 7)generic Benadryl capsules and 8)generic Claritin tablets; 9)bathed in Aveeno skin relief bath treatment with colloidal oatmeal skin protectant; and 10)dabbed Caladryl clear lotion on the itchiest places.

We really have tried to make him comfortable! Some of these things we are doing in combination...some by themselves...sometimes alternating between one cream and another. Anyone, have any other amazing remedies for relieving itching? As you can see, we will try just about anything at least once!

Well, he has made it through a three day week. He comes home tired/sleepy and ready to head to his recliner. I think that he is looking forward to Saturday and Sunday to rest and recuperate.

Thursday, March 26, 2009

My turn!

I must say that I would have rather done about anything than have a doctor's appointment today, but it was time for my six month neurological check up...at least it was in Tullahoma. It took forty-five minutes from leaving home to driving back into the driveway. My kind of appointment!

Since several have asked how I was doing and others have no idea what my ailment is, I will take most of today's blog space to let you know about "me." Six years ago on April 20th (Easter night) I was struck with Transverse Myelitis. This is an uncommon (but not considered rare) neurological disease. It affects one to five people out of every million.

Transverse myelitis is a condition resulting from inflammation of your spinal cord. The word "myelitis" refers to inflammation of the insulating material that covers nerve cell fibers (myelin), and "transverse" means the inflammation occurs across the width of your spinal cord. If myelin is damaged, communications relayed between your spine and the rest of your body may be disrupted.

Signs and symptoms of transverse myelitis usually develop rapidly over a period of hours. Less commonly, signs and symptoms progress over several days or even weeks.

Typical signs and symptoms include:

Pain: Pain associated with transverse myelitis often begins suddenly in your neck or back, depending on the part of your spinal cord that is affected. Sharp, shooting sensations may also radiate down your legs or arms or around your abdomen.

Abnormal sensations: Some people with transverse myelitis report sensations of numbness, tingling, coldness or burning below the affected area of the spinal cord. You might notice that you're especially sensitive to the light touch of clothing or to extreme heat or cold. You may feel as though the skin of your chest, abdomen or legs is being wrapped by something tight. Weakness in your arms or legs. Some people with mild weakness in your arms or legs notice that they're stumbling, dragging one foot or that their legs feel heavy as they move. Others may develop severe paralysis.

Yes, yes, and more yeses to a lot of the above description (all that are in bold I experienced). It was a very scary night and for several months after. By God's grace I was one who had most of the symptoms reverse themselves...it started with my right arm going numb...eventually travelled up my arm and across my body and down to the toes on my left foot. And it reversed itself by going away in my left foot first...and to date the numbness and tingling in my right arm/hand has never gone away. I guess the scariest part was that feeling of my lower rib cage area being tightly wrapped--almost felt paralyzed there.

I had not felt well the week prior to this (perhaps a virus?) Perhaps that is the cause perhaps not! The afternoon/evening prior to this all happening I had a really bad headache and bad back pain. Then I was awakened with my arm going numb, muscle spasms, difficulty walking, and on and on--and the symptoms continued to pile on for about 24-48 hours.

The neurologist that I was referred to at the time couldn't be sure if it was MS or Transverse Myelitis (TM). The final diagnosis came from an MRI--MS shows in the brain and TM doesn't. But suffice it to say when you get all the symptoms of MS in about 48 hours it is scary!

I was pretty sick for the first 6 months to a year--but some symptoms did start reversing themselves pretty quickly. I only dragged my foot for a week or so. The band around my middle stayed around for a while. A strange occurrence was that my body was like a human tuning fork for many, many months--really several years--just getting a little less over time. If someone would come up and lightly touch my arm--it would send vibrations all through my body just like a tuning fork, if I would put my elbow down on a table just the least bit hard--the same thing--very, very strange feeling! Another really scary feeling was when I would bend my neck down to look at something on the floor--I would feel like I had had an electrical shock--needless to say I tried to keep looking straight ahead as much as possible. The night that TM "hit" me I had these really unusual muscle spasms...you could actually see the muscles in my thighs rippling. For a long time, really till just recently, if I would walk rapidly anywhere--like around the block or from the parking lot to a store--when I stopped my whole body would feel like it was vibrating.

Many, many who have TM are totally paralyzed so that is why I say that by God's grace I am the way I am today--almost totally back to "normal." The TM will never totally go away, since it is a spinal cord injury--perhaps caused by a virus or it could be an auto-immune problem--doctors/researchers aren't really sure. Today my right arm and hand stay numb/tingling all the time. I still have trouble with extreme temps. My body acts like a barometer when the weather is changing (not joint pain from arthritis (have that too!)--but total aches in all parts of my body--don't know exactly how to describe it but sometimes it is bad enough that I just have to give in and flop down on my bed and wish for the weather to change quickly! I often know when the weather is bad in Arkansas and heading our way! I feel best when visiting in AZ--where the barometric pressure stays pretty much the same. Season changes are not good for me.

It is a strange, strange disease--but it always reminds me that God made us and that we are fearfully and wonderfully made--and when I am having trouble--that is when I understand the fearfully!

I am so thankful that my TM reversed itself enough that I have been able to take care of Woody at this time. He has taken such good care of me for so many years--especially these last years with TM. A memory of my early TM days (which I had forgotten) came flooding back when Woody had his first rigors...I had had them several times in the early months of my TM...mine would start with the feeling of ice water running through my veins--not too pleasant. So I was able to REALLY empathize with Woody every time he had rigors!

So...that is "My Story!"

Now for an update on Woody. He continues to get stronger and stronger. I think that he came home from work less tired (sleepy!) today than yesterday. He said that he had a lot to do today at work so that made the day go by faster for him. I'm sure that it is good for him to be getting back into a normal routine. Still VERY itchy.

Wednesday, March 25, 2009

He survived!

Woody made it through a full day of work for the first time in two months. I called to check on him mid-morning and got his answering machine...it hadn't been changed since January 22nd (the day before his shoulder surgery). I came home after he did this afternoon and I found him in his favorite place--in his recliner...resting. I asked him if he was "tired," and he said he was "just sleepy." But he looked "tired" to me! I'm not sure where our definitions of the words differ...but differ they do! Even after all these years...can you imagine that?! When I use the word "tired," he almost always corrects me and changes it to "sleepy" when it's in reference to himself. Maybe one of these days I will learn to use the proper term! But as for me at this moment...I'm both tired and sleepy...I don't have any problems admitting to both!

I hope that he gets a good night's sleep tonight, as that should help his day tomorrow. I'm also hoping that getting back into a routine and getting out of the house will help him feel better quickly! I know that he was glad to see his co-workers again.

Tuesday, March 24, 2009

Last Vanderbilt appointment for March and a surprise

Another long day at Vandy--left at 11am and didn't get home till after 6pm. And, I'm not sure that this appointment was really necessary. Once they found out that we were requesting to have the radiation done in Tullahoma, the doctor said that he didn't tell other doctors what to do (as in the doctors in Tullahoma)...soooooooooo we did finally convince him to do a referral for us--which is what we were there for! They got us an appointment at TN Oncology here in Tullahoma on March 31 (the title just said last Vanderbilt appt. for March!). I was glad that Dr. Holt had told us yesterday not to let them make us feel that the radiation treatments had to take place at Vandy--that Tullahoma would be fine.

The doctor did say that our insurance might not accept radiation done at this time in Woody's treatment--that "usually" it is done immediately after the surgery--and that our insurance might not agree that it should be done two months after the surgery. We and/or the radiation folk will be looking into this. We did pick up a cd of all the xrays, etc. that have been taken at Vandy to take to the radiologists in Tullahoma.

One interesting thing that we found out is that IL-2 and radiation can't be done at the same time--that this is a window that Dr. Sosman has found for Woody. He said that he and Dr. Sosman had found out the hard way that you couldn't mix the two...we didn't ask what happened--but don't want to find out personally!

Now for the surprise--Woody is going back to work in the morning (Wed., March 25)! Before we left this morning, Woody got the letter from his short term disability that had been interpreted at work that he had been approved till May 6...but when he read it he didn't interpret it that way. So he thinks that his short term disability was over Monday (March 23). So today while we were at the oncology radiologist's we put in a call to Dr. Sosman to get a note that releases him to go back to work tomorrow. So we picked that up after our radiology appointment.

Please be in prayer for him as he returns to work.

Monday, March 23, 2009

Good doctor's report!

Woody had a very good report from Dr. Holt today. And it only took a half day this time--noon to a little after five. They took three xrays to make sure that all was ok--and all was! She was very pleased with how he had healed--both inside and out. She wants him to start physical therapy on his shoulder--that will take place here in Tullahoma.

She talked with us about surgery on the lower left arm. But at the moment she thinks that it would be best to just hold off till all IL-2 after effects are over...plus she was looking down the road at "perhaps" more IL-2 if results are seen on the scans. So she just felt that it was best to just wait before consulting with a trauma surgeon. Woody has an appointment to go back to see Dr. Holt in three months. That might be the time that she refers us...but she did say that "if" another IL-2 doesn't happen then the surgery could happen sooner and we can contact her and they will refer us.

As much as Woody doesn't want to think about further IL-2 treatments, we still have to hope and pray that he will get them...because that means that the first treatments did what they were supposed to do!

Woody has an oncology radiation consult tomorrow at Vanderbilt...shall we sing "on the road again?!" I guess that shortly he will start radiation--but here in Tullahoma. Dr. Holt said that he would probably have two weeks of radiation.

Melany is on Spring Break so she took us today and is taking us to tomorrow. She is spending the night with us tonight.

I'll report tomorrow about his radiation consult.

Sunday, March 22, 2009

What a difference 40 years make!

Hard to believe but 40 years ago today was our wedding day. Have we changed?! My how time flies...when you are having fun and even when you're not! I know that our followers, mil and sil, know where they were 40 years ago...wonder if our faithful follower, Grandma Carla, remembers! I will say that never in my wildest dreams did I envision back then what we would be going through now. Guess it is best to go into marriage blindly...if I had known, I would not have thought that we could handle certain things we have gone through or what we are going through at this time! But God has seen us through. We have been blessed in so many ways during our years together--both in the ups and downs. My prayer now is that we have many more years together. I told Woody "40 more," but that would make us over 100! Not sure that will happen, but we'll take as many more as God will grant us!
It's a beautiful spring day here in middle Tennessee--sun shining, 65 degrees, birds singing, flowers and trees blooming. I went to Sunday School for the first time in weeks--trying to get back into some kind of a routine! Woody continues to get stronger...but also continues to be miserably itchy and peely. We go to see Dr. Holt tomorrow--his eight week check after his shoulder surgery. She will probably give us a referral to a trauma surgeon at Vandy to see about getting his lower left arm fixed--once the peeling stops.
I'll report tomorrow on our visit to Dr. Holt.
PS I just found out that if you click on the wedding picture that it makes it big--it's pretty blurry since I took a picture of a picture in our wedding album...but if you do click on it, you can see the mole on Woody's forehead--that will lead to all that we are now going through!

Saturday, March 21, 2009

Bon Appetit! and Saturday's update

I thought that I would share something that sounded good and tasted good to Woody right from the start of getting out of the hospital after the first Interleukin 2 treatments. I enjoy cooking so when we got home I started listing some of his favorite recipes. I would name and he would shake his head--most of the time he shook it "no." But, from the first, when I mentioned the following omelet recipe, he shook his head "yes," and, when I made it, it tasted good to him. It is a recipe that we found some years back in a Williams-Sonoma catalog:

Spinach and Gruyere Omelette
3 eggs
Salt and freshly ground pepper, to taste (I usually omit both of these)
1 Tbs. water
1 tsp. unsalted butter (I usually brush the omelet pan with olive oil instead)
1/3 cup shredded Gruyere cheese
1/3 cup loosely packed spinach leaves (I usually stack the spinach leaves and thinly slice them.)

In a bowl, combine eggs, salt, pepper and water. Beat lightly with a fork until well blended. In an 8" omelet pan over medium-high heat, melt butter, swirling pan to coat it evenly. Add eggs and cook, using a wooden or silicone spatula to lift up cooked eggs around the edges while tilting pan to let uncooked eggs flow underneath, until eggs are fully cooked, 2-3 min. Sprinkle cheese evenly over omelette, place spinach on one half of omelette and fold in half. Gently slide omelette onto a plate and serve immediately.

One of the things that two of the Woody's nurses showed concern over towards the end of his second IL-2 stay was that one of his lab tests showed that he was anemic...to the point of almost needing a blood transfusion. The doctors never seemed to be concerned over that particular test. But I decided that when we got home that we were going to really work on getting him built back up. So this omelet, which has tasted good to him even when other food didn't, has become a regular way for him to start his day--along with a lot of other good things at his other meals and snacks to build him back up. When he had lab work done last week the number had gone up 10--still not in the normal range, but not in the dangerous range any longer. So looks like he is eating better. He has to be eating better since there for a little while he was eating next to nothing! As far as out of whack lab numbers...I just think that IL-2 has done "a number" on his whole system and it is going take a while to have normal readings once again.

Now for Saturday's update on Woody...he is definitely getting stronger daily, his hoarseness is getting better, but the itching and peeling are still with him and show no signs of going away any time soon! He finished the book that he started yesterday and started another one--a good sign! And March Madness is still in the air.

Friday, March 20, 2009

Friday update

Things are pretty much status quo for Woody. Which is a good thing--except for the peeling and the itching--he will tell you those aren't good things! I keep wondering when those two side effects will end.

Woody received word from work today that his short term disability has been extended till May 6th. Originally he was supposed to go back to work this coming Monday (March 23). That would have been difficult for several reasons--he's still pretty weak when it comes to doing anything for any length of time--an 8 hour day would have been rough. Plus Monday (Mar. 23) he has to be at Vanderbilt to see Dr. Holt (8 wk. check after his shoulder surgery) and then he has an appointment at Vanderbilt on Tuesday (Mar. 24) with an oncology radiologist to make plans for his radiation treatments--so it would have been hard to be in two places at once--work and Vandy.

March Madness is entertaining Woody to a certain degree. And, today, for the first time in a couple of months, he picked up a book to read. He finds it rather hard to read "one handed," and also he just hasn't felt like reading for some time now. So reading and basketball have helped him to pass the time today. It was really good to see him with a book in his hand again.

Thursday, March 19, 2009

Thursday evening

Things are pretty much the same--Woody's getting stronger, still peeling, and still itchy!

Woody was planning on going on a walk this afternoon...but the temperatures dropped and also it was breezy so he decided that it was a bit too cool.

Now he's settling in for an evening of March Madness.

Wednesday, March 18, 2009

What a difference a week makes!

A week ago today we had only been home from Vandy for a couple of hours. Woody has definitely made progress since last Wednesday. Late this morning he went outside and took the garbage can around to the back of the house. He didn't come back in as soon as I expected so I went to look for him and he was sitting on the glider on the front porch. He didn't sit too long as there was a breeze and he started feeling cool. He also walked out to the mail box and got the mail. After lunch, he rested for a while. I went upstairs to read and rest a little too. The doorbell rang while I was upstairs. It was our 7 year old grandson, Graham. He had been whittling on a stick and came to show me. I asked him if he wanted to show it to Goosey. (Goosey is what the grandchildren call Woody.) Graham said that he already had shown it to Goosey. I asked him when and he said when Goosey was out in the back yard. Woody had joined the neighbors (Nathan's family) out in the back. He picked up a few fallen limbs and then did some weeding in the garlic garden. So definitely Woody has been more active today--he did say that the extra activity had tired him out. It is good to see him up and about and good for him to get some fresh air! It has been an absolutely delightful day here in southern middle TN--Spring is in the air!

The itching and peeling are still real issues with Woody. He will be so glad to see both of those IL-2 after effects over and done with! My after effect seems to be extreme tiredness--maybe one of these days I will catch up on lost sleep!

Tuesday, March 17, 2009

St. Patrick's Day Doctor Report

Dr. Sosman was very pleased with how well Woody is doing. He mentioned how much better Woody is a week after this last treatment in comparison with how he was the week after his first treatment. Definitely he is doing much better this time! Dr. Sosman was very pleased that he had gotten in 19 treatments. He said that 19 was close enough to 20 and agreed that Woody had made a good decision to stop when he did and not take a chance on compromising his kidneys this time. Woody's creatinine level had gone down to "almost" normal--the number is sitting just above the normal line in today's lab report.

Dr. Sosman ticked off three things that we still have to deal with: 1) upper left arm/radiation; 2) broken bones in lower left arm at wrist/surgery; 3) the melanoma.

#1: we will be having a consultation with someone in radiation at Vanderbilt next week. The radiation treatments once decided upon will be done here in Tullahoma. We will be seeing Dr. Holt, Woody's orthopedic surgeon at Vandy, next week also for his 8 week check after surgery that removed the melanoma tumor from his upper left arm.

#2: we will discuss his lower arm surgery with Dr. Holt. She is supposed to recommend a trauma orthopedic surgeon for Woody to see at Vandy.

#3: In 5 weeks Woody will have a cat scan done to see how his melanoma "hot spots" have responded to the IL-2 treatments. He will see Dr. Sosman in 6 weeks to find out the results of the scans. (and...shhhhhhhhh...we won't go here yet...but...if results are seen, then he could be having another set of IL-2 treatments a week or two after seeing Dr. Sosman.) Woody doesn't want to hear this and can't imagine doing treatments again--at this point!

Today's Vanderbilt visit was much shorter than previous ones...but still wearing on Woody especially. He was ready for his recliner and a good nap when we got home.

He is still miserable due to itching!

Monday, March 16, 2009

Monday update

Not a lot new to report. Woody is still quite peely and itchy. Last night after I posted on the blog, he told me that he was itching so badly that he was in misery. So I put two kinds of lotion on him and gave him some Benadryl. And something in that combination helped him at least some as he was able to sleep at least off and on during the night. He got to itching again today and again I put lotions on and gave him another Benadryl...and he slept a good part of the afternoon. So at least he is getting some sleep--thanks to the Benadryl! He just took another Benadryl. Hopefully that will help him sleep tonight.

The places that have peeled are now a lot like a rash--rather red and bumpy--like an allergic reaction. I forgot to tell you last night...when I brush the skin off of his back, I have to vacuum the chair that he is sitting on as well as the floor around him! We will definitely be glad to have this phase of the treatment behind us--for more reasons than one!

Tomorrow I will report on his latest lab report and his visit to Dr. Sosman.

Sunday, March 15, 2009

The Straight Skinny!

Seeing is believing! Here is a picture of the way Woody's back is peeling. His upper shoulder area wasn't quite as bad today--the peeling had moved down to below his shoulders down to mid back and then it was bad at the small of his back. He is quite itchy still. His arms are also itchy and peeling. I keep telling him that he is a mess!

I do think that he is stronger and feeling a bit better today. He watched basketball this afternoon and did a bit of dozing too. I am hoping that the feeling stronger is a trend!

He goes back to Vandy for lab work and to see Dr. Sosman on Tuesday (Mar. 17th). The wheels on the car will once again head Nashville way! We haven't had a long enough respite!

Saturday, March 14, 2009

Saturday update

I would say that things are pretty much status quo for Woody today. Everything he does takes so much effort. He took a bath this morning and that really wore him out. I just asked him how he was feeling this evening and he said that he felt pretty weak. I asked him what to say in the blog tonight and he said to tell you that he is molting! The way he is feeling and the molting/peeling are part of the after effects of the IL-2. I am very pleased that food appeals to him once again. Hopefully we can build his strength back up quickly since he is eating so much better after this treatment.

Friday, March 13, 2009

Thank goodness for insurance!!!!!!!!!!

I got curious about how much each Interleukin 2 infusion cost. One of our nurses tried to check into it and came back with a figure--but it didn't seem to figure out correctly for the pharmacy bill for our two stays...seems like it was double what the pharmacy told her. The total pharmacy bill for the two times that he was in the hospital for the IL-2 treatments was............$150,446.39!!!!!!!!!!!! That is just the pharmacy bill for the two stays!!!!

It is lower than I had told several people--I think that they must have subtracted some of the infusions that he didn't take after we were discharged from the hospital.

I have asked for an itemized bill--so perhaps I will be able to uncover the exact cost of the IL-2 yet! If I do find out, I will share the info!

Woody has had another day of recovery from the IL-2. He has started getting itchy. He has slept some during the day. I think that we got our days and nights turned around in the hospital--as tired as I was yesterday I just couldn't sleep last night and Woody had a lot of trouble sleeping too. He definitely feels better than after the last treatments, but still isn't going to go out and win any races!

Thursday, March 12, 2009

Something new added to the blog

I found a map to add to the sidebar of the blog. When you come in to read the blog it records that you have been here and will eventually add a heart to the map! Be sure to click on the map--it will show the whole world map and below the map there is a list of the newest places--that list updates every five minutes or so--but the map updates less frequently.

For a while my map on the blog didn't show hearts, but the map, that I got after I clicked on the main blog page map, did have hearts showing. I ended up clicking on the refresh button on the blog page that I had been reading and the hearts were added.

I really wish that I had had this map from the start. We have had support from places all over the world. We do appreciate each and every one of you!

It will be fun to see where all our supporters live!

"L A M P"

There was a sign with "LAMP" and an Aladdin's lamp on Woody's door this visit. I noticed that several doors had this sign on them...but not all the doors. I finally asked a nurse what the sign meant. She said that it stood for "Look At Me Please." And that it was on doors of those who were at risk of falling. It reminds the nursing staff and the care partners to look in on these patients to make sure that they are okay. I looked at her puzzled as Woody wasn't having any trouble getting up and down out of bed and hadn't been light-headed. She asked me if he hadn't fallen on some stairs. I again looked puzzled and then had an "aha" moment. I remembered the fall that he had had when he returned home from the hospital after his first stay--when he fell going up our outside front steps. But I couldn't figure out how they knew this, as we hadn't mentioned it (that I remembered) to anyone upon entering the hospital this time. The nurse said that if we had mentioned it to anyone at Vanderbilt at any time that it gets put into his records. I do think that we (probably can be chalked up to me!) told the story at Dr. Sosman's office on his return check-up the week after being released from his first hospital stay. Anyway...Woody got labeled! And the sign stayed on his door the whole time we were there, despite one nurse saying that she was going to try to get it removed as she couldn't see any reason for it being there. We were also told that we got in just under the wire of a new "rule:" that all who are subject to falls are going to have to wear neon socks that have traction on the bottom starting next week!

Woody has had a pretty low-keyed day. He has done a lot of resting/sleeping which is expected after these treatments. He is once again peeling, but at this point isn't itching as much as he did the last time. We are both very glad to be home! Adrenalin has stopped flowing for me once again--so I haven't accomplished much today--didn't even get unpacked--maybe tomorrow? It is a good feeling to realize that we don't have any immediate plans for Woody to go back into the hospital. We are home for a while, except for doctor appointments. He has two Vandy appointments in the next two weeks--one with Dr. Sosman next week and then one with Dr. Holt, his orthopedist, the next week. The car wheels keep turning towards Vandy--much to our dismay!

Wednesday, March 11, 2009

Home Sweet Home!

How good it is to be home once again! Nathan came and got us this afternoon and we pulled into our driveway around 4. I figured out the other night how many days we had spent at Vandy Hospital (our home away from home!) since Jan. 23 and it came to 3+9+6 which equals 18 too many days!

Woody's creatinine level dropped markedly in this morning's lab report--so good to see it on a downward path so quickly this time. It looks like we managed to not compromise his kidneys this time.

He really feels ever so much better coming home this time than he did the last time. Definitely his kidney problem dominated the after effects the last time. He has not slept much the last two nights--he had a lot of trouble sleeping the last time after the infusions were completed too--so guess that is an after effect of the IL-2. I think that he will be able to sleep now that he is home. Hopefully he will have time to catch up on his sleep--with no nurses coming in every two hours to check his vital signs!

We found out last night that it is only the IL-2 patients on the cancer wing who get their vital signs checked every two hours--the rest of the cancer patients just get checked every four hours. Last night Woody graduated to every four hours since he had completed his infusions and had been unhooked from the IV and all the leads. You can "almost" get a full night's sleep when the nurses only come in every four hours!

I am ready to sleep in a bed again. That chair that pulls out into a bed is ok...at first...but it gets old sleeping on it after a while. I am very tired--I'm looking forward to a nice hot bath and then "jumping" (yeah, sure!) into my own bed for a good night's sleep.

Tuesday, March 10, 2009

19 out of 28!

Woody's 7th dose yesterday afternoon (2pm) was his last of this regimen. Which makes a total of 19 (12+7) out of 28 possible over the two regimens. The goal that Dr. Sosman had set was to reach 20--so the goal was almost met.

As I said last night, Woody decided not to take the dose at 10pm (Mon.). Woody told the resident when he came in a little before 10 that he wasn't going to take the infusion since he was running a fever. The resident had to call the Fellow to report in to him. Then the resident came back in to tell us what the Fellow told him...that since Woody would have missed three doses that that would end this treatment. We had talked before the resident came in and Woody was pretty sure that he was ready to stop due to the fact that his creatinine levels continued to rise. He didn't want to get into the critical situation with his kidneys that he was in the last time. So...hearing that from the resident didn't bother him since he was ready to stop.

We were told later by the nurse that if Woody really wanted another infusion today (Tues.) that he could have it--that protocol had changed and that obviously the team didn't know about the change! (He said, she said...once again!) I do know that Dr. Sosman had told us that Woody could skip doses--he even mentioned take one, skip one, etc. He never mentioned that once he skipped more than two that the treatment would end. We did talk to the team about what Dr. Sosman had told us...they said that they would talk with Dr. Sosman. Dr. Sosman is the one who writes the protocol. Anyway...it makes no difference since Woody was ready to stop.

Our care partner told us this morning that they had been told at the nurse's station that Woody would possibly be discharged today. But when the medical team came in, the attending physician said that she wanted him to stay here another day or two to make sure that his creatinine levels start to come down.

Woody feels so much better today. They have unhooked him from all the heart monitor, etc. leads and also from the IV pole. He "almost" feels like a free man...but won't really feel free till he is dismissed and heading home!

Monday, March 9, 2009

10th regimen dose skipped

Woody has chosen to skip his 10pm dose.

The 2pm dose wasn't as easy on him as the two prior ones had been. He did have the shakes--not as bad as sometimes, but still had them. And then this evening he has spiked a fever. He is feeling pretty rough at the moment.

I am hoping that he can rest, but at the moment he doesn't think that he will be able to sleep.

He will make a decision in the morning as to whether he will take the 6am dose. We were told today that we had been told incorrectly that skipping two doses in a row would end this regimen. Not sure who is right! Another case of "he said, she said!" I just know that he is very close to 20 and if all he gets is 19--seems good enough to me! His creatinine level had risen a little more this evening--we will see what it is in the morning--that lab report will figure into his decision.

9th regimen dose = 7th dose for Woody (2pm Monday)

Woody's 7th IL-2 dose of this regimen was just completed.

He, again, had an eight hour period of next to no side effects--at least none of the bad immediate physical ones. Yeah!!!!!! We definitely are seeing the light at the end of the tunnel. It will only take one more dose to get him to the 20 doses (from the two regimens) that Dr. Sosman likes to see his patients reach. And, if he would have to stop after this one, it would be okay too.

Woody's creatinine levels continue to rise--even when he skips a dose, so he wants to get the treatments under his belt before they get to a point that he has to stop--and we definitely don't want to get to the level that he got to the last time. We want him to stop well below the level where he has to stop. The last time he stopped when they got to the level that the doctors stop the treatment--but his levels continued to rise for several days after he stopped--to the point that there was a scare of renal failure. He has enough problems without adding kidney failure!

I'll report later on how he does with this dose.

8th regimen dose = 6th dose for Woody (6am Mon.)

Woody's 6th dose of this regimen got underway about 6:35am. His last dose didn't cause any major problems--Praise God! He felt slightly nauseated, but never got sick. He did ask for nausea medicine to accompany this infusion to hopefully stave off nausea like he had yesterday.

He didn't sleep much during the night...but at least he wasn't having bad side effects. Maybe he will get some rest with this dose.

We were talking this morning about all the doses that he had taken thus far and that at last we could see the light at the end of the tunnel. One of the things that Woody said was: looking back he didn't see how he had managed to take 12 infusions in a row.

This morning--sometime before 4am I happened to glimpse something through the closed blinds in our room. I decided to investigate by opening the blinds a bit--and it was what I had thought--an almost full moon "rising over Vanderbilt!" A nice "picture" to start my day!

Well, this dose is complete. I'll report later on how "things" go with this infusion. He is resting peacefully at the moment.

Ohhhhhhhhhh now I can see the pretty pink sunrise clouds in the reflection on the building across from our window. Another pretty sight to start the day! God is good...all the time!

Sunday, March 8, 2009

7th regimen dose = 5th dose for Woody (10pm Sun.)

Woody's fifth dose of this regimen got underway a little after 10pm and the dextrose solution that flushes the line just finished. Wonder what the night has in store for us?!

Woody definitely got to feeling better as the afternoon progressed--once his fever and nausea left. He has even watched TV this evening--the first time that the TV has been on this go round. I think that his decision to skip the prior infusion was for the best for him.

In the lab work that was done a little before 8pm his creatinine level had risen a little more--just a fraction but still it rose a bit more. I sat this afternoon and looked at all the lab reports from the prior visit up to this visit. It took 7 infusions the last time to get his creatinine level to the same point that it took 4 infusions this time. Since this is a different team of doctors, I think that we have to keep an eye on things since they may not "get" the whole picture! Personally I'm not as impressed with this team of doctors as I was with our first team.

I'll let you know in the morning how this infusion and the hours following it go. Hope that it is a dull story to tell!

Skipping regimen dose 6 (2pm Sun.)

Woody is running a fever and has chosen not to take his 5th dose at the regimen's 6th dose time of 2pm Sunday. He is hoping (?) to be able to take his 5th dose at 10pm. We just found out if he chooses to not take two consecutive doses that that will end this IL-2 regimen. Always finding out something that hasn't been told to us before!

Dose 5 = Woody's 4th

Woody did take the IL-2 infusion in the "dose 5" time slot (6am Sun.)--so he has had four doses so far this time. He is now resting peacefully. He has had quite a bit of nausea and did have the rigors/shakes. This time his shakes were controlled "fairly" quickly with meds. I'm sure that they weren't stopped quickly enough for Woody--but at least they lasted less than 30 min. rather than 45 min to an hour or more. Now the nausea is another thing...it hasn't gone away as quickly this time. They are trying another anti-nausea drug to see if that will keep his nausea at bay over a longer period of time.

His creatinine level had risen above the normal range--but just barely. The nurse just told us that they would be starting to do lab work prior to each IL-2 dose. They usually only do that the first time or two and then wait till after the 8th dose. I am sure that since Woody's first treatment of 12 doses compromised his kidneys, they plan to keep a closer watch on his creatinine levels now that they have moved out of the normal range.

One thing that we have both noted--we don't think that we will be affected by the time change this time--since our bodies don't know what time it is anyway! We just doze "whenever" since we never know when we won't be able to sleep!

Saturday, March 7, 2009

Skipping dose 4

Woody has chosen to skip dose 4--the 10pm infusion. He feels like he needs time to recover from the rough time that he had this afternoon. This seemed to him like good time to skip a dose as the time change would have put the doses an hour closer together.

He is hoping to get some much deserved rest tonight--but of course when he is awakened every two hours for vital signs--it is rather hard to get very good rest. But he has been dozing a lot of the evening--pretty deeply at times.

Having the extra hours between doses should hopefully help him be stronger for the next dose. The doctor will be here around 5:30am to see how he is doing prior to starting the next scheduled infusion at 6am. The nurses have been making a plan as to how to get him through the doses without such severe side effects. Time will tell! All are trying very hard to make this as easy as possible--unfortunately it is just not easy.

And in case you are counting--he has now had a total of 15 infusions (12 last time and the 3 this time). Dr. Sosman would like him to have as close to 20 as possible. I just did some figuring and "if" he should just take every other dose the rest of this stay, he would get in 20 doses. That "if" of course is dependant on lab work being ok, etc.

Drama on the 11th floor...again!

Enough of this "deja vu stuff!" Less than an hour after Woody had the third infusion he felt cold. I immediately hit the nurse call button and she came right in and gave him the injection right into his IV line. But shortly he was shaking uncontrollably. It wasn't long till we had at least 5 nurses and our care partner in our room because his heart rate was setting off alarms. Our nurse was with another patient and she entered the picture a bit down the road! They ended up giving him the pill that he takes under his tongue. When that didn't get the quakes to subside, they gave him another injection into his IV line. Finally after about 30 min. his tremors did subside. Then he got very nauseated--by that time it was just his nurse, the care partner and me in the room with Woody. He got medicine for nausea and finally dozed off for a bit--but not long enough.

Our care partner had the "line of the day." He said after Woody got so nauseated..."What do you expect when you shake like that...it's like when you jostle a baby and then hand the baby off to someone you don't like!" That even got a slight smile from Woody even feeling as badly as he was at the time!

Woody has now gone to the next extreme--he's now burning up--has a fever--I have been cooling his face and neck off with a cold wash cloth. He has dozed off for the moment. So all is quiet on "the western front" at least for the time being.

Stay tuned for the next installment!

3rd infusion complete!

The third IL-2 infusion was completed at 2:40. They are now flushing the line with the dextrose solution before they switch back to the saline solution.

The best news is that the 2nd infusion went pretty much side effect free--no nausea, no shakes, no fever! Woody slept a lot and even ate a little--a banana, some mandarin oranges, strawberry ice cream and some jelly beans over the 8 hour period. He drank water and some 7-up. He even got up and brushed his teeth. AND best of all he smiled at me--a smile that I haven't seen often enough over the last weeks!

He is sleeping now. I'm praying that the next eight hours go as well as the last! The nurse said that she told them at the pharmacy to make it just like the last dose!

2nd IL-2 dose underway

His second dose got underway at 6am...so it is about finished as they only take 15 minutes.

It has been a pretty rough night. It is amazing to me how quickly medicine can "mess" with you! We thought that Woody was going to miss having the rigors (shakes/quakes) as those have happened in the past about 1 1/2 to 2 hours after the infusion, but about 4 hours after he had the first dose he got up to go to the bathroom and he got chilled and the rigors started. But he had already had a dose of what they give him for rigors...they gave him a dose of that for pain just prior to the first IL-2 dose. So since he had already had a dose, the dose the nurse gave him for his shakes seemed to quell them fairly quickly and he soon went to sleep. He also has been nauseated and has run a fever. He has gone from one extreme to another--at one point he was shaking from chills and soon after he was hot due to a fever. He has been drinking. At this point his creatinine levels are still in the normal range. Praise God!

The second dose is now finished and the line is being flushed with the dextrose 5% solution. Woody is sleeping at the moment. I'm praying that this 8 hours is better than the last! But I know that in reality that the medicine is building up in his body--so he is probably not going to feel a lot better.

Friday, March 6, 2009

Deja vu...all over again!

Finally we are in a room...it took almost three hours after they admitted us--seems like we are always waiting around here! Everything was very timely till he was admitted and we had to go to the waiting room to wait for a room--that was around 2:15pm and we didn't get a room till a little after 5pm...too long to wait when you don't feel well.

We definitely didn't get a room like we had before. I am feeling claustrophobic! I think that when I pull out my bed that it will block the bathroom door!

On the way here Woody said that he had changed his mind! But...Melany didn't turn back and we are here nonetheless! One of the residents (she's from Manchester) on the oncology team just came in to check him. He has had lab work done. We are waiting to be able to see it online. We knew the last shift RN and Care Partner and we haven't seen the next shift yet. So we are settling into the same routine as before... vitals every 2 hours, lab work every 6 hours, infusions every 8 hours...

He has really talked to them about controlling the rigors (shakes) so we shall see if they are successful! Everything is now on schedule for the 10pm #1 infusion.

I will keep you posted!

Oh, I almost forgot to share a serendipity...shortly after we got into the room, I was standing in the doorway and I looked up and who should be walking down the hall but Dr. Holt, Woody's orthopedic surgeon. She stopped to talk to me and asked how he was doing, etc. I told her what a rough time he had had with the first set of infusions and about his kidney involvement. Then I told her about his hip bothering him. She came into the room and pushed on the spot and asked him questions about when it hurt, etc. Then she went out and looked at the xrays that had been taken on Tuesday. She came back into the room and said that she saw nothing on the xray that would indicate cancer eating at the bone. She felt like it very possibly could be bursitis and that they would check further, and if it were that an injection could help it...so on down the road...but talk about God's timing to have her come along just when I stepped out of his room! That was definitely a reassuring word for Woody (and me!) to hear just prior to starting his treatments.

Thursday, March 5, 2009

Tomorrow at this time...

We should be all settled into our hospital room on the 11th floor of Vanderbilt tomorrow at this time awaiting the 10pm hour for Woody's first Interleukin 2 infusion of this round.

Today Woody has spent resting. His hip is still bothering him when he walks around--so he has mainly stayed put in his recliner, taken pain meds, and rested up for what is ahead of him. He did shower, wash his hair, and shave and then rested some more. Today I have continued to get the things ready that we need to take. It seems like it should be easier since this will be our second visit...but it doesn't seem to be...I guess I know too much this time?! I keep changing my mind...a woman's prerogative...but...at the moment I wish it weren't!

To be continued from Vanderbilt tomorrow...

Wednesday, March 4, 2009

He said! She said!

The doctor said that Woody was going to enter the hospital today (Mar. 3rd). The nurse said that he was going to enter the hospital on Friday (Mar. 6th).

Dr. Sosman's nurse called at noon to give us the new day and times and explain the reason for the change. What happened was that Dr. Sosman had another patient entering today and a doctor can only have one patient admitted to the cancer ward in a day. The nurse assumed after seeing Woody last week that he wasn't going to be going back in for more treatments so she scheduled someone else for today. So she was very surprised when Dr. Sosman came out from our office visit yesterday saying that Woody was definitely going to go back in for the second round. She explained to Dr. Sosman what she had done and he understood so they just rescheduled Woody for this Friday, Mar. 6th.

Woody is very glad for the respite after the long day yesterday. He is resting this afternoon. And I have been trying to get everything gathered together that we need to take. We did have to rearrange our ride to the hospital. Melany will now be taking us.

Same schedule just a different day: we are to be at the hospital at 1pm for Woody to have a picc line put in, then head to admitting, then sit around till a room is ready for us, then settle in till it is time for the first IL-2 infusion at 10pm.

Please pray for Woody's strength, as he is so much weaker than when he went in for the first set of infusions. Also pray that his kidneys don't get compromised this time.

Tuesday, March 3, 2009

Well...another day at Vandy...and changes in plans

Woody had his labs done first. Then he went in to see Dr. Sosman. Dr. Sosman's Fellow talked with us first and asked questions to see if Woody was ready both physically and mentally for the next IL-2. Then Dr. Sosman came in and talked with Woody. His creatinine level is finally back in the normal range--just barely but at least in the normal range. They took a lot of time with us talking through questions that Woody had and also checking their computer records. Both doctors encouraged Woody to go back for at least one more treatment. They also stressed that Woody could take as many or as few as he wanted. That he might even take one treatment and then skip the next and then take the next, etc. They talked about how to help him get through the rigors (shakes)...which is really the worst part of this treatment for Woody.

Woody did share that his right hip was hurting (the hurt didn't all go away after he removed his glasses from his pocket (see Feb. 28th's post)). That wasn't a spot that anything had shown up on prior xrays, scans, etc. The Fellow said that perhaps it was bursitis. That sounded good to Woody--over the alternative that it might be another melanoma tumor in the bone. Dr. Sosman did order x-rays to sort of check out the situation.

So we left Dr. Sosman's office with orders for xrays and also with the go-ahead to be back at Vandy tomorrow (Mar. 4th) at 1pm to have the pic line put in and then be admitted for the second part of his Interleukin 2 treatment.

He got the xrays done. (They took over 20 xrays!) Then we headed back home--another very long day--we left the house at 12:30pm and didn't walk back in the door of our house till a little after 8pm.

Shortly after we got home, I went upstairs to check our phone messages. AND...the second message was from Dr. Sosman's nurse saying that Woody wasn't entering the hospital tomorrow...that it would be Friday (Mar. 6th) and that she would call with details tomorrow!

Soooooooooo looks like plans have changed. We aren't all that upset about the change as this will give Woody a couple more days to gain more strength. And I am glad to have a bit more time to get ready.

Monday, March 2, 2009

Monday update

Woody feels like he is getting a little stronger each day. Today he shared some really good news...his little finger and his ring finger on his left hand now have full feeling again. The feeling in them hadn't been right since his surgery after his bicycle accident on Sept. 15th last year.

Tomorrow Woody has an appointment with Dr. Sosman and will also have lab work done to make sure that he is ready to go back for more treatments on Wed.

Sunday, March 1, 2009

Snowy Sunday

We woke up to a world of white this morning. I guess that March came in like a lion--although colored like a lamb!

We have pretty much had a lazy day. Woody spent the afternoon watching basketball games. I started gathering things that need to be packed for the next hospital stay.

Things are pretty much status quo.