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The Waking
I wake to sleep, and take my waking slow.
I feel my fate in what I cannot fear.
I learn by going where I cannot go.
We think by feeling. What is there to know?
I hear my being dance from ear to ear.
I wake to sleep, and take my waking slow.
Of those so close beside me, which are you?
God bless the Ground! I shall walk softly there,
And learn by going where I have to go.
Light takes the Tree, but who can tell us how?
The lowly worm climbs up a winding stair;
I wake to sleep, and take my waking slow.
Great Nature has another thing to do
To you and me; so take the lively air,
And, lovely, learn by going where to go.
This shaking keeps me steady. I should know.
What falls away is always. And is near.
I wake to sleep, and take my waking slow.
I learn by going where I have to go.
--Theodore Roethke
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Joy's Updates - Straight from the Horse's Mouth.
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Monday, September 30, 2002
Posts
Brian said yesterday that my posts were more mundane now which is a good thing. He said it's a relief to read that I watched some movies and took a nap instead of that I almost died. This is true! I keep feeling better and having more energy. The only thing that bothers me are the hard, lumpy lymphadema places in my neck that make it so stiff and uncomfortable. Changing the bandages is routine, but I'll be glad when all of this is over and my neck is more normal again. I guess this will take a while, but I'm on sick leave and have time to devote to healing.
Mother is staying home today and getting things done there, so we'll go to lunch tomorrow before my appointment with Dr. Spigel at 2:00. I don't know what I'd have done without her taking such good care of me when I felt so bad. Now she can get back to her life but still do things with me now and then. We like the lunch outings.
8:29:00 AM
Sunday, September 29, 2002
Brunch
We had a wonderful meal at Ellendale's, and It's always fun to spend time with Brian and Melissa. They gave me the Special Edition of Monty Python and the Holy Grail DVD. It has lots of extra stuff on it. I'm looking forward to watching it.
Melissa is at the end of her first trimester and is showing a bit. She's taking really good care of herself. They tell them so much more now than they did us about all of that. We talked about all the combinations their baby could inherit. It's so exciting!
4:05:00 PM
Birthdays
Mother and I are going to meet Brian and Melissa at Ellendale's for brunch for Brian's and my birthdays. His is Monday, Sep. 30, and mine is Oct 3. We used to go to the tea room but have branched out the last few years. We go in July for Mother's and Melissa's birthdays. Melissa's mother Paula joins us for that one. We went to Ellendale's for theirs and really liked it. If you haven't gone, the food is great and it's a treat. Here's the link to their website: http://www.ellendales.com
Hope you're all enjoying this beautiful weather. The crafts fair is at Centennial Park this weekend.
9:41:00 AM
Saturday, September 28, 2002
Homecoming
Yesterday Mother and I went to the Dickson Methodist Church for chili and then watched the homecoming parade. The weather was pretty and it felt good to stand outside and enjoy it. Then we went to Volume One Bookstore and walked there and back from the Methodist Church. That was my exercise. I need to start walking and building up my energy.
Not sure about today and what's going on. I'm still sorting through papers and getting things organized.
9:58:00 AM
Friday, September 27, 2002
Movies
I was lazy yesterday and watched movies on cable I'd seen before - Accidental Tourist, Something to Talk About, and Miss Congeniality. Enjoyed them again on a rainy day. Today I'm doing laundry and cleaning. Also have some errands to run.
The rain stopped during the night but looks as if it might rain some more. It's supposed to be gone by afternoon anyway.
I'll be glad when my neck gets back to normal. It's going to take a long time. This lymphadema and the crater are still about like they were even though Dr. Burkey said that place is healing. I guess if this hadn't been avoidable, I'd feel better about it. If I'd had the necrotic tumors drained out with a needle, I wouldn't have had surgery. It wouldn't have become septic and I wouldn't have almost died too. Dr. Oh said that is what should have been done. Guess it's 20/20 hindsight now, though. Right? Doesn't do much good to think about it that way but to learn from it. I have learned from it!
9:52:00 AM
Thursday, September 26, 2002
Isidore
We're getting the Isidore rains. We needed rain since things had become so dry, and now it's making up for it. Some places have flooding problems, so I hope it doesn't overdo it.
My hair looks much better. I've been going to Terry Tucker for over 25 years, I think. He's really good and cuts my hair well. It's not that easy since it's naturally curly. Many people messed it up.
I slept all morning. I got up around 7:30 and then got on the couch and slept some more. This rain makes me lazy.
I just looked at the times on the posts and they are correct now. Go figure!
11:28:00 AM
Wednesday, September 25, 2002
Hair
I have an appointment to get my hair cut today. It's so thin that I'm not sure what Terry can do with it, but if anyone can, he can. It's like a dandelion that someone blew half off. At least I have some hair. I'm thankful for that.
I've enjoyed hearing from you and knowing what you're doing. Thanks!
When I try to post these updates, I get a message that they are unable to load the file and to try back later. I noticed that the times are wrong on when I wrote them too. Blogger is having problems.
8:52:00 AM
Tuesday, September 24, 2002
Driving
I drove today. I haven't been mostly because of range of motion with my neck and being so tired that I wasn't sure my reaction time was adequate. It went fine today. The car started and I could drive. It's been over 3 weeks since I've driven.
Well, I'm up later than usual for me, so I'm heading to bed!
11:23:00 PM
Fall
I've been sleeping later now that the weather is cooler. Feels good to be able to sleep again. I still take naps (sometimes morning and afternoon and sometimes just afternoon). I just pay attention to what my body needs and go with it. This lymphadema has made my neck stiff in that I can't move it much up and down. I can move it from side to side but not that far. I'll be glad when it goes away.
The season premieres are happening this week, and I'm really looking forward to West Wing. I really like that show and have watched it from the beginning. Also looking forward to Friends, Boston Public, Judging Amy, and ER. I watch the HBO ones too - Six Feet Under, The Sopranos, Curb Your Enthusiasm, Oz, and Sex and the City.
Hope you all have a good day.
8:32:00 AM
Monday, September 23, 2002
And Another
Sally came down and we sat around here and talked for about an hour until Mother, Butch, and Janelle came over. We all went to lunch at the park. We had a great time.
I watched the Emmys last night of course. I never miss the Emmys and Oscars and usually watch the Tonys and Grammys. I like awards shows like that. Someone has to.
The weather is getting cooler. I hope we have a pretty fall.
8:22:00 AM
Sunday, September 22, 2002
Another Good Day
Mother and I went to Buddy's for lunch yesterday and had small hamburgers, which are still really big there! Their regular ones are the size of hubcaps. It tasted the way I meant for it to. So many foods taste strange now because of the chemo, including water. Then we went riding around. Mother still drives, but I think I can soon. I'm not sure about my reaction time, and it's not that easy to turn my neck which at this time does look like the Elephant Man.
We rode all over the place and saw the new school Creek Wood and around checking out things. We also went by to visit Butch and Janelle. I hadn't seen the redecorating they've done. It looks so good, and they keep their place neat and clean. They are good at clearing things out, which is something I need to learn. It's going to be a major event for me to get rid of things. Also what I'll find will be interesting - like an archaelogical dig, I guess. When I feel better, I have my work cut out for me.
My cousin Sally is coming from Murfreesboro today for a visit. Sally, Mother, and I are going to lunch somewhere. I keep feeling better but still have to rest some.
7:20:00 AM
Saturday, September 21, 2002
Good Day
Yesterday was fun. Wayne and Marian, friends from the Navy days, had been in Missouri visiting his parents and on their way home to Atlanta. They called to see about stopping off here. It was great to see them again, and we had a good visit. We had a close group of friends then, and I'm still in touch with them. We don't see each other often, but when we are in contact, we pick up and do well. We bonded really well and did all kinds of things together. They are a wonderful group of friends.
Melissa sent me a picture of the ultrasound of the baby. How exciting! Fortunately, it was labeled. They are going to find out what gender it is when the time comes. So far everything is going well. This baby is already loved and welcome, and all of us in the family say we can't wait to meet the baby and see what its like. We love Brian and Melissa so much and are excited about a combination of the two of them that they bring up. It's so exciting!
Kathy and I have noticed how much is genetic that no one would imagine, and I can see a lot about her that is like me and others in my family. I can see it some with her children (my grandchildren) too.
I'm going to try to get thank-you notes written today. My mind hasn't been that alert, so maybe now I can make sense. Hope you all have a good weekend!
8:44:00 AM
Friday, September 20, 2002
Tired
I can't believe how tired I am. I go to bed between 9 and 10, get up around 6, and then rest in the mornings and afternoons. Yesterday Mother and I went to the park to eat and then to Kroger so I could get some things I needed. Then I had to rest when I got home. It takes a lot of energy for healing. Also I was so weak and had a fever for over a month. It still really scares me when I think about how close to death I was. Thanks for all your thoughts and prayers.
6:57:00 AM
Thursday, September 19, 2002
Appointment
Dr. Burkey said my neck is healing really well and that he thinks it should just heal from the inside out instead of doing a graft. I'm glad not to have more surgery right now. There are hard, lumpy places under my chin and jaw and front of my neck that are lymphadema ( not sure how to spell that ) which will take from 3-6 months to go away. I asked Dr. Matheny (I saw him quite a bit in the hospital - he's on staff there) if I were going to look like the Elephant Man in my neck since he told me my neck would never look normal because some of them would still be there. He said not that bad, so I asked, Elephant Boy? He said Elephant Baby. I guess that's not too bad.
I go back to see Dr. Burkey in 3 weeks and will keep taking antibiotics until then. I still feel really tired from the anemia and will be glad when the Procrit does its thing. I was so sleepy last night that I went to bed at 9:00 and slept well.
We veered off some in the conversation yesterday since Dr. Matheny told Dr. Burkey that Monty Python and the Holy Grail was my favorite movie. I mentioned that to him and the residents when I told him I felt like that guy they threw on the death cart who said, "I'm not quite dead!" when I went in to see Dr. Burkey that Friday. Dr. Burkey said that wasn't far from the truth. They all admit that I was almost dead and could have died soon if nothing had been done. That is really scary, isn't it? Then Dr. Burkey said he'd just seen My Big Fat Greek Wedding, and we laughed about the funny things in it. I like those guys there. Dr. Burkey is all business when it's about medical stuff and is a great doctor.
7:09:00 AM
Wednesday, September 18, 2002
Modem
The new modem works, and here I am. I'll give you a report later on after I see Dr. Burkey. Isn't Brian helpful? Such a good son!!
7:21:00 AM
Tuesday, September 17, 2002
Visit to Dr. Spigel
Brian, here, but there's no cause for alarm. Mom is just having modem trouble. She should be back up and running online tomorrow.
Mom went to see Dr. Spigel today where it was discovered that the chemo has made her anemic by messing up her white/red blood cell ratio. He gave her a shot of Procrit. She will see him again in 2 weeks. He says that there's no danger in holding off on the chemo. The pathology of the samples from her surgery looked very good. The surgeons took out 3 lymph nodes which were inflamed but were not cancerous. He thinks 98% of the cancer is gone but won't know for sure until they are able to do a scan. He's not sure exactly when that will be since Mom hasn't healed from the infection and surgery yet.
Mom will go back to Vanderbilt to see Dr. Burkey tomorrow.
10:51:00 PM
Sleep!
I start getting ready for bed now around 9 pm and usually am in bed before 10. The new me! I've been waking up every two hours, so a few of you asked why I didn't take the sleeping pills I had prescribed for me. Guess I was trying to do it without them, but took one last night and it worked. I slept the whole night until 6:30!! I just barely woke up once but not enough to look at the clock. This is great. Maybe I'm back on track now.
Dr. Spigel called yesterday afternoon to see how I am, when I came home from the hospital, what antibiotics I'm taking, and what was said during my conversations at Vanderbilt. To his credit, he sends patients to other doctors when it's needed. I told him when he said he'd tell his partners about my reaction so they could be prepared in case it happened with one of their patients that I'm always the teacher! I guess that's my role in life. He said, "Well, Joy, some of us are just born to it. What can I say?"
Right now my life revolves around these bandages. They have to be changed twice a day. I was nervous yesterday doing it all by myself, but it helps knowing Jean will be here to check progress and be aware of any problems. I don't want any more infection in that area. It feels so good not to have a fever for the first time in over a month. I'm grateful for so many things I used to take for granted.
7:53:00 AM
Monday, September 16, 2002
Hectic Morning
When I got out of the shower this morning, water was over part of the floor. Just taking a shower is a bigger deal than before since I have to put an aquaguard plastic cover over my bandage to protect it from water. I put down towels and fortunately it didn't go too far. Mother was here to help tape my bandage. I called Porter Bros. who sent someone over to fix it within a couple of hours. I just hate those low-water toilets and wish I could get a different kind on the black market somewhere. The EPA thinks they save water, but not if you want to save plumber bills.
Mother and I got several things done today including laundry we hadn't planned.
I have an appointment with Dr. Spigel tomorrow and with Dr. Burkey Wednesday.
3:04:00 PM
Sunday, September 15, 2002
Time
So much of my time is spent on taking care of my physical needs. I spend a lot of time taking care of my neck and teeth. Chemo is hard on teeth and I have quite a bit invested in mine. Mother came over today and we had lunch together. The home health care nurse was here for the last time this morning to oversee my doing the bandage myself. I feel confident about it now. Jean Smith came over this evening to change it and check to be sure it's healing the way it should. She'll come by in the evenings for a while.
I still feel weak and tired. Takes time, I guess.
10:05:00 PM
Rain
It rained during the night and sounds so good on my metal roof. I slept well and have been sleepy all morning and napped. Feels great to be able to sleep again. I'm still weak and tired which will take a while to get over. I'm in the habit now of calling Mother soon after I wake up, so she knows I'm OK. She's my rock and so much more that I can't even begin to explain. Those of you who know and love her don't need an explanation. She is just wonderful.
10:36:00 AM
Saturday, September 14, 2002
Busy Morning
It's likely that I won't post as early as I have been, so don't worry if that happens. I'm feeling so much better but am not sure how much worse I could have felt before all this. They took really good care of me in the hospital, but no one can sleep in there. At least I didn't. I'm pretty tired but feel good. It felt so good to be in my bed last night. I slept!!! It's so good to be home.
If you are squeamish, don't read any more.
Changing the bandage on my neck is really involved. What happened is that all the dead tumor mass abscessed, and the toxins killed the skin above it which involves several layers. That was the whitish-gray area. Now the goal is for the healthy skin around it to grow more skin cells and cover it again which will take months to completely do this. A skin graft will make it happen faster, so I might have to do that. This 2.5" x 3.5" crater on my neck is down to the granular layer and has to be carefully attended to prevent infection and promote healing. This requires professional help to check it and to be sure it is healing as it should.
We're having to deal with the insurance nazis to approve more than two visits from the home health nurse. She came yesterday evening and this morning and said she'd come in the morning anyway. She trained Janelle (my sister-in-law) and me on how to do it. Janelle did it herself this mornining and I will tomorrow. We have to wear those gloves and change them a few times. Saline solution is used to wash it off and for one of the bandages applied directly to the bad part. Then more gauze and an abdominal pad over that. We have to be really careful. I have trouble getting the tape positioned by myself. Jean Smith is going to come help us, too. For any of you who know about this, it is a wet/dry bandage for a wound.
Life has definitely changed! I'm glad I have one. This was a close call.
12:49:00 PM
Friday, September 13, 2002
Got Home
Mom just called. She is home now and is doing fine. She's still tired, of course but otherwise is doing well.
4:17:00 PM
Thursday, September 12, 2002
Going Home
Mom will be going home some time around mid-day tomorrow.
The area on her neck which is still discolored and was the dead tissue is about 3 inches by 2 inches. Dr. Burkey says that the skin cells should grow back over the area in a couple of weeks although she will probably have to have a skin graft at some point. In the meantime, she will need a Home Health Care person to help her apply pressure to the bandage when she changes her dressing.
The nurse specialist was back again today to give Mom more information about the HHC opportunities.
3:45:00 PM
Wednesday, September 11, 2002
Home Health Care
While I was visiting Mom today a clinical nurse specialist came in to talk to her about the home health care situation. The nurse said that she would do the research to find out which HHC places in Dickson work with Mom's insurance. The doctors at Vanderbilt will teach Mom how to change the bandages herself and the HHC person will be there to help the first couple of times and to observe her and help her with anything she needs after that. The whole time that the nurse specialist was talking to Mom she was joined by a social worker who was introduced to us but never said anything. It was also never explained exactly what she was doing there. Curious...
Mom feels better every day and has been taking walks around the 11th floor of the hospital for the past couple of days. She is really bored and is ready to go home now.
Sally (Mom's cousin) stopped by just before I left. I'm not sure how long she stayed afterwards but she and Mom visited for a while.
9:13:00 PM
Eventful Morning
Just about every member of the ENT surgical team visited Mom this morning. Dr. Burkey said that the dead part of the affected area is not as big as they had feared it might be. He also said that she will be sent home some time this coming weekend. Mom hopes that means Saturday. She's ready to go home which is a good sign. Mom's fever is gone which means that the antibiotics and her immune system have the infection on the run. As was mentioned earlier, a home health care person will visit her once a day for a while.
Mom asked Dr. Burkey about how two doctors (Spigel and the radiation oncologist) misread the severity and danger of the swelling in her neck. He said that it was a difference in outlook between different types of doctors. "We surgeons are simple people," he said. "We see something, we want to take it out."
11:52:00 AM
Tuesday, September 10, 2002
In Other News
Not much to report tonight. Dr. Oh came by to see Mom and said she's recovering well. Other than that she's resting and healing.
9:12:00 PM
To A Good Home
One cat (Columbo). Three years old, gray, longhair. He's very friendly and loves other cats. He loves to be combed and petted. He's an indoor cat and he needs someone who can give him lots of attention.
If you or anyone you know would like to have a new cat let Mom know by emailing her at one of the addresses at the top of this page.
9:10:00 PM
Culinary Improvement
Mom reports that her lunch today was actually quite good. She had a tender steak, peas, a ceaser salad and an eclair. She's continues to feel kind of tired but is still doing well. She doesn't know when she will be going home yet. Dr. Burkey will stop by again today to check on her.
Mom says "Hello" to everybody and thanks for all of the cards and phone calls and good thoughts and wishes.
The clock in Mom's room constantly reads 9:45. At least it's right twice a day.
1:31:00 PM
Monday, September 09, 2002
Visit From Dr. Burkey
Dr. Burkey visited Mom while I was on the phone with her tonight. He is the head of the surgical team that operated on her (Dr. Oh actually performed the surgery). Dr. Burkey confirmed that the surgery went really well and that Mom would only have to clean the area a couple of times a day with soap & water and hydrogen peroxide once she is home. A home health care person will stop by for several days once Mom is home.
Mom reports that her dinner last night was awful. The following breakfast was all right and the lunch today was interesting. She was served turkey and dressing and cranberry jello . Her comment was, "I've been in here longer than I thought."
9:15:00 PM
Visit From Dr. Spigel
Dr. Spigel came to see Mom yesterday and he said that in 31 years of practice he has never seen a reaction to chemotherapy like the one she had. He confirmed what we thought: The chemo was too effective. It killed more of the tumors than they expected it to and Mom's body couldn't handle the quantity of matter. Because the tumors were in her lymphatic system they had nowhere to go. Dr. Spigel assured Mom that she would not have to go through this again. He is suspending her treatments for a few weeks until she recovers from the infection problems. He suspects that 90% of the tumors are gone but since he hasn't seen the scans he isn't positive.
Dr. Chang (one of the ENT surgeons) changed her dressing again and said that there has been no change in her condition so she will definitely be in the hospital for a few more days. Mom is feeling much better physically, emotionally and mentally than she did yesterday.
9:46:00 AM
More From The Hospital
Mom was really tired and weak yesterday but still felt better than she did before the surgery. One of the doctors came in to drain the area more and said that it was still showing signs of infection. If it doesn't clear up in the next couple of days they might have to operate again. If it does clear up they will just keep her in the hospital while she heals.
There's not much else to tell right now which I see as a good sign.
8:23:00 AM
Sunday, September 08, 2002
More from Brian
Mom looked and acted like herself again last night which was a great relief to all of us. The surgeon said that they are going to keep her in the hospital for another three to five days. Mom was glad to hear that. This will give her a chance to recover from the surgery and to get her body back up to the level it should be in order for her to undergo more chemo. Still no word on what will change on that front. Also, the stay in the hospital will allow the doctors to keep an eye on the swollen area in order to operate again if necessary.
I'm headed out the door now to see her again. The next update will either be tonight or in the morning.
10:10:00 AM
Saturday, September 07, 2002
Straight From the Horse's (Son's) Mouth
Brian again: I have just returned from the hospital and Mom's surgery went well. They cleaned out and removed a lot of infected matter from her neck and upper chest. Despite the after-surgery feeling she says that this is the best she has felt in two weeks. They brought her back to her room around 12:15 today and she ate some broth, jello and juices.
I'm going back to see her tonight so I should have an update either late tonight or early in the morning. She's not ready for any visitors just yet but she wants me to tell all of you how much your thoughts and prayers mean to her.
She's going to have a talk with her oncologist soon about what this means for the future of her chemotherapy.
3:22:00 PM
Update From Brian
Brian (Joy's son) here. Mom was admitted to Vanderbilt Hospital yesterday around noon. They drained some of the fluid from the swelling which helped her feel much better. They are performing surgery on the area as I post this to fully drain and clean everything out. I'm headed to the hospital now and I will post updates as soon as I get back home (or near any computer with internet access). I spoke to Mom this morning and she said she had a good night and she is really looking forward to the surgery.
8:20:00 AM
Friday, September 06, 2002
Surgeon
When Dr. Spigel called this morning (at Mother's - I spent the night), he wants me to go to Vanderbilt to see a surgeon today if he can get it arranged. He said since he can't see this, he wants someone he trusts to look at it and see what might could be done - like draining it. This is a relief to me. I want all this out of my neck and now shoulder and upper chest. I hope they do something. This is so miserable and I feel horrible.
9:31:00 AM
Thursday, September 05, 2002
Late
I had a gynecologist appointment this morning for a regular check-up and to get my hormones. Dr. Spigel called again to check on me. He said if this were seriously infected, the anitibiotics I'm taking wouldn't be able to hold down my fever. It's been below 100 and above a little, but that's OK.
Mother stayed with me yesterday and made sure I ate. I'm going over there this afternoon. If I don't post on here in the morning, I spent the night.
To let you know how weak I am, it took a major effort to type this.
12:29:00 PM
Wednesday, September 04, 2002
Aha
I've figured out another reason for feeling so bad. I had a stronger dose of chemo when I had treatment, and it was probably too much. Before, I wasn't anemic, so I think that's what's going on.
12:36:00 PM
Call
Dr. Spigel called me around 8:30 to see how I am. He said he woke during the wee hours of the night thinking he should have put me in the hospital and didn't get much sleep after that. He asked a lot of questions and said we don't want to lose ground. The tumor mass as it died off was too much for my body and that's why all this is going on. He told me if my fever got to 103, there was a lot more weakness, couldn't take food and liquids, or seepage from my neck. (gross - hope that doesn't happen) He said he'd call me back this afternoon and to be sure to call there if anything changes.
9:37:00 AM
Long Night
I think I saw every hour last night on the clock. I went from bed to couch to let pillows dry off. I'm really tired of this medicine smell. I tried to watch TV last night, but it got on my nerves. The swelling seems to be a little lower, so I hope it does that each day and moves on out. It feels sort of puffy and liquid in there now under my tightly stretched, discolored skin. During the night my temp was 101.5 and this morning it was 99.9.
I'll be glad when these shots do their thing. The Neulasta helped last time and increased my white blood cells. The Procrit will do that for the red ones. Chemo gets in the bone marrow and destroys them.
Hope everyone has a good day. Thanks for checking on me!
8:05:00 AM
Tuesday, September 03, 2002
Nadir
Another reason I feel so bad now is that 7-10 days after treatment is the lowest point. It will happen every time, especially if my blood counts get low. So that and the fever keep me feeling pretty bad. I'll be so glad when all this is over and I can feel good again. It will and I will. I have hope and know it's going to turn out OK.
7:01:00 PM
Reprieve
My white count is low and I'm anemic, so I got a shot of Neulasta and one of Procrit. That should help. Also got prescriptions for more antibiotics. I talked to Dr. Spigel about radiation, and he said he didn't want me to do it now. He said I didn't need to drive to Nashville. Also after examining me, and noticing how this swelling is migrating down, he said it should move on down and disperse in my body. I'm really relieved. Mother drove me to the doctor and then went to get my prescriptions for me. I don't know what in the world I'd do without her. She's just amazing
11:17:00 AM
Monday, September 02, 2002
Labor Day
Amy and Janelle came to get me. It was so good to get to see Amy and have a visit. She seems so happy and has the most wonderful husband, Chris. All of our children are doing well, married the right ones for them, and are fun to be around. I'm so proud of them all. We have a close, loving, supportive family. The cousins are the best, too!
I stayed at Mother's all afternoon. She just brought me back (with food). I slept on the couch most of the time and actually did get some sleep. I sweated more than usual but believe it's from the lower doses of Prednisone as I'm getting off of it. My neck is still really swollen and puffy and all kinds of colors - red, blue, purple, orange. I wonder if my white blood count is low and that's why I feel so wiped out. I'm looking forward to seeing Dr. Spigel tomorrow morning.
This has been one of my worst days as far as energy and strength.
6:50:00 PM
Radiation
Short night again. Slept on the couch in the den sometime between 2:30 and 5:30 since I could get comfortable there. Sleeping and sweating seem to go together with this. Very yucky.
The more I think about radiation, the more I'm not sure I can handle it now. It's a gut reaction. This is already bad enough without adding to it. I'm not sure waiting would make much difference, but I'll talk to Dr. Spigel about it in the morning and do what he thinks is best. I go in for blood work tomorrow morning and to hear how things are going. I wish I could postpone it.
I'm going to Mother's for lunch today. If I don't feel like driving, someone will come get me. My niece Amy is here from Kansas City, so I'll get to see her.
8:11:00 AM
Sunday, September 01, 2002
Play
Mother and I went to the Renaissance Center to see Harvey this afternoon. She drove since I don't feel that competent to drive now, but will see if I can change that soon. Ned Southerland (Cornbread Ned as he likes to be known) had a small part in it, and his son Tim a larger part. It was a community theater production. I think it was good for me to get out like that. I was tired when I got home and ate some watermelon and rested. Then I had a couple of enjoyable phone calls and am warming some food Mother brought me, doing laundry, and unloaded the dishwasher. Who would have ever thought these would be accomplishments! I'm going to try to make myself do more when I can so my energy won't get so low.
Yesterday afternoon Cindy Draper stopped by and brought the funniest hat. It's a black baseball cap with a bunch of black braids hanging from it. She also brought some Ben & Jerry's!!
I'm still concerned about this radiation. In his zeal to go in and zap the bad guys, I wish Dr. Hunt would remember radiation isn't the only weapon being used here. Chemo and Rituxan are at work. What I wish is that he'd miss some places in my neck that the chemo can handle like leaving my salivary glands, thyroid, and other things like that alone. This can cause damage to teeth, and I have some expensive dental work. So I wish he'd go lower instead of trying to get them all with radiation. I think these are legitimate concerns. I suppose they think compared to death, they are small, which they are, but they are long-term.
I've figured out something. Since I've never had any serious illnesses or major medical ordeals, all this now is overwhelming to me. This is out of my range of experience and takes a totally different way of coping.
6:55:00 PM
Good Morning
My mornings seem to be better than later in the day. Maybe because I've had a little sleep. Just posting so you know I'm around!
8:35:00 AM
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