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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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Saturday, August 31, 2002
Pretty Day
It's a pretty day today, and I hope it stays pretty for those of you with outdoor plans this weekend. I'm feeling better. Still have the huge neck, but that's going to be with me for a while, it seems. One of the Yahoo men said that he had chemo and radiation and together they work better than each separately, like synergy. The whole is greater than the sum of its parts. That was encouraging. It's been over 3 years for him and he's doing well. One woman mentioned drinking aloe vera juice mixed with juice every morning and evening and said she didn't have a very sore throat at all. I'll get some at Wild Oats since I'll be in town every day. That makes sense and would be soothing.
Well, I'm going to get some things done around here and move around. See? I am feeling better!
9:22:00 AM
Friday, August 30, 2002
Sarah Cannon Center
We got back around 1 this afternoon and then I took a pretty good nap. This is all getting much more involved than I anticipated. I guess I thought I'd have Cancer-Lite and just be sort of tired and feel bad some during treatment. Yeah, denial or maybe wishful thinking. I do feel a little better today and think it might be the antibiotics.
Dr. Hunt wants to do radiation every week day for 4 weeks. My time to be there will be 2:45, so if I need a driver sometime, please let me know if you could be available then. Mother and I think we'll be fine, but I might need someone sometime.
What he said about the swelling is that the treatment is working and that the lymphatic system is like a filter and is catching all the dead lymphoma cells and other stuff. Lymphoma responds really well to radiation, so he expects to go in and zap them. Today was strange. They put this white plastic mesh mask over my face and neck that had been softened in warm water, I think. Then they let it harden. Then they x-rayed and marked all over it. I suppose I'll wear this every time so they can know where to aim. He said I'd have a sore throat and that part of my parotid gland would be gone which will give me a dry mouth temporarily, I hope. If they can't miss my throat, what's to keep them from destroying my thyroid and those other glands? I guess I'll deal with that later, but it's sort of scary.
They are really nice there at Sarah Cannon, and it feels calm there too. I've embarked on a journey much larger than I thought about. I guess I'm getting the entire experience! I have to believe it's all going to be worth it and will turn out OK.
5:36:00 PM
Thursday, August 29, 2002
Change
I called Dr. Spigel's office to let him know the swelling is worse. It took all day for the nurse to call me back, so I called again and got to talk to Janice the one who gives me my IV's. She told him what was going on and he made me an appointment at Sarah Cannon tomorrow for radiation at 8:00 with Dr. Ed Hunt. He also called in a prescription for an antibiotic. Thank goodness I'm getting someting else done about this! Janice asked if I were scared to death, but I told her I was ready for some relief. She said she'd be thinking about me. Butch is going to drive Mother and me there.
I probably won't write in here in the morning since I'm leaving early. I'll give you a report when I get home.
3:14:00 PM
Mother
Mother brought me some food yesterday and worked around the house. She cleaned out the refrigerator, vacuumed, swept the patio, watered the flowers, did some laundry, and dusted. That made me feel better. You know I feel bad if I can lie around and let her do all that. Mostly it's my neck. It hurts if I don't keep it propped up. I don't understand this swelling and am not sure wha't going on. I'll ask Dr. Spigel specifically Tuesday. If I need radiation, I'm fine with it. Whatever helps at this point!
We called Kathy to wish her a happy birrthday.
I slept last night from before 10 until around 1:30 and have been awake since. Hope I get some naps in today.
Blogger is really slow this morning and not cooperating too well. Hope this gets posted.
6:45:00 AM
Wednesday, August 28, 2002
Yahoo Group
I'm having my crackers and Prednisone. Hope it kicks in and helps more than it has been. Mother is coming over to vacuum and do some things for me this morning. That will help.
One of the women on the Yahoo Group said she went through this exact thing with her neck. Her doctor also told her she'd have to have radiation if it didn't go down, but it did in about a week. Le'ts hope this does sooner. There are people from all over the world on that list but most are from the US and Canada. One man said that he had night sweats really bad during chemo too. That seems to go with it.
I don't have such a great attitude. I'm enduring this and hoping it gets better. Not too many people go through chemo without feeling really bad.
7:35:00 AM
Tuesday, August 27, 2002
Whining
This is just different. The 100 mgs of Prednisone hasn't reduced the swelling yet. I got an email from one of the guys on the Yahoo NHL Group who said his second treatment really made his lumps and swelling disappear. I'm hoping for this. I look like one of those frogs that balloons its neck out. This makes my skin burn from being stretched so far. My neck is stiff and sore, too. I have to prop it on something to get some relief, too. I'm not sure what's going on. Maybe the chemo is killing the tumors and it's all clogged up in there. It needs to leave. Wonder where it goes? And how? I have such a grasp of anatomy.
When this swelling goes down, I know I'll feel better. Still just napping instead of sleeping.
7:31:00 AM
Monday, August 26, 2002
Later
I rested and napped and feel better. I even got out and walked for a while on my street. I've been needing to do that since the lymphatic system depends on muscles to make it work. Maybe this will help get my neck moving in the right direction. Walking also will help with several things like energy and sleeping, I hope. Anyway, it won't hurt.
8:13:00 PM
Report
Dr. Spigel said he'd hoped for more progress than I'm having and didn't like the swollen neck. If it's not down by next week, I might have to have radiation on it. So let's all work on this! What we want is for everything to quit being inflammed and swollen in my neck. It's like a traffic jam or pile-up that keeps congesting traffic. So use whatever visualization to pray it out of there, so I can move on with this. I'm going to be taking more Prednisone which at this point is definitely preferrable to the way my neck feels. I don't feel as good as usual after treatment and am pretty wiped out. I'm going to go rest. It took around 4 hours for all the infusions.
2:57:00 PM
2nd Treatment
I go in for my second full treatment this morning. My headache is pounding and my neck hurts too much. More drugs will send reinforcements into the battle. Hope the Decadron makes me feel better this time, too.
If I feel like it afterwards, Mother and I are going to check on wigs. They have free ones at the American Cancer Society on Charlotte Ave in Nashville, so we'll go there first to see what they have. Right now it's thinning considerably. Oddly as the hair on my head falls out, those in my chin are hanging in tight. Oh well.
More later.
6:32:00 AM
Sunday, August 25, 2002
Self Medication
I have some extra Prednisone from my last prescription, so I took some today. It has reduced the pain some but the swelling seems about the same. At least that's better. I guess I was sort of hoping for cancer and chemo lite. Maybe it doesn't exist. Some people have many more side effects than I'm having, so I'm thankful it's not worse and wish it weren't for others either. Thanks for being there. I don't feel like having company or going places right now, but I enjoy hearing from you.
1:37:00 PM
Pain
How does this feel? The pain in my neck feels hot and like a toothache in some ways. My skin hurts because it is streteched from being swollen. My head feels as if a machete were driven into it. Nothing seems to touch it. The ibupropen helped some. Kroger brand PM hasn't even done it. Prednisone hasn't been the miracle it was before, or if it has, this is huge. Monday will help.
5:17:00 AM
Saturday, August 24, 2002
Happy Announcement
Melissa called other morning to tell me she and Brian are going to have a baby! I couldn't put it on here since they hadn't gotten in touch with everyone else yet. I am so thrilled about this! What a most welcome and already loved baby we'll all get to meet! The baby is due in April. This is the best news ever!!!
8:08:00 PM
TV
I've been watching the Biography Channel quite a bit lately. I've always like to read biographies, so this works for me. It's hard to concentrate on reading now, but I can watch short shows and some movies. They had a piece on The Lost Generation this afternoon. That period of history and literature interests me. Digital cable is nice. I have more channels not to watch something on! Usually I can find something though from movies, HGTV, and others. Then there's BBC since Monty Python keeps us on the sunny side of life.
If you consider watching the movie Sweet November, don't bother. It was one of the worst and sappiest movies I've seen even though I stayed till the bitter end. Charleze Theron's character had non-Hodgkins lymphoma which is now making its way into the movies. Keanu Reeves couldn't act at all in this one. It was really bad! Bandits was good, though. Bruce Willis was funny in it, but Billly Bob Thornton was hilarious! Cate Blanchett was good too. She can handle a variety of roles and was in Elizabeth, Lord of the Rings, Pushing Tin, The Gift, and The Talented Mr. Ripley.
My cousin Ellen's daughther Nancy and her husband are in NYC. They're going to see a play and a couple of ballgames. I would have loved to have seen The Producers with Matthew Broderick and Nathan Lane in it. Now I'd like to see Hairspray since I heard such good things about it on NPR.
I remembered Benadryl and took some this morning and slept the whole morning and have been napping off an on. Bad timing! I'll take them in the evening from now on when I take any. I also take lots of ibupropen to help relieve this neck pain. I'm turining into a walking medicine cabinet.
Thank you so much for sending cards, postcards, email, and all! Those mean so much and brighten my day.
4:57:00 PM
War Zone
Had a pretty good night. Got some sleep but not enough. It was good being with Butch and Janelle last night. He looked and seemed just fine. His reports were good. They said he was in really good shape and that his heart was strong. He went in when he had early signs. They put in two stints in the blood vessels where he had the angioplasty, gave him diet advice, and sent him on his way. Amazing how quickly they can do things now. He'll be off work next week and plans to play golf since one of his doctors recommended it. I'd like to have heard that conversation!
My neck is so sore!!! It makes my whole face and chest hurt. It's hard to get comfortable.
Hope all of you have a great weekend!!
7:28:00 AM
Friday, August 23, 2002
Butch, etc
I slept a couple of hours but will take a nap eventually. Mother called this morning to say she was cooking barbequed chicken and made me some vegetable soup to bring home. That chicken has seemed good lately and I've wanted some. Butch and Janelle are supposed to go over too. I'm glad. She said the doctor said Butch did really well on the treadmill and that his heart is strong. He didn't have a heart attack but had those blockages. Those were unblocked by the angioplasty, and he should be able to do what he was doing. That amazes me that all that can happen so fast and get people back in action.
I'm just going through a rough time here and am getting worn out. Now, what you can do is just write and let me know what's going on in your lives and what you're thinking. Don't feel compelled to cheer me up. I'm OK about the outcome of all this and know it's working. It's getting to me, that's all. So write newsy emails. I like keeping up with you and knowing what you're doing. Thanks!!
10:04:00 AM
Long Night
I probably don't need to post right now. I haven't been able to sleep all night. I just can't. It's probably mostly the Prednisone but also the rest of it too. This is the hardest thing physically I've ever been through. I can do it and will of course. What else can I do? I just need to complain. So I am. I hate all this!! It sucks! How's that? I'm going to try again to see if I can sleep.
5:41:00 AM
Hair Today, Gone Tomorrow?
Well, it's happening. My hair is starting to come out. I can brush it or run my fingers through it and lose quite a bit. Guess it's wig time. I was really hoping my hair would stay in there since it makes it so much easier to be seen. All this must really be working which is probably why I feel so bad.
They told Butch he could come home tomorrow and go on and do whatever he's been doing. That means physical things, not smoking. They'll have him back to discuss diet and lifestyle changes. It sounds as if everything went really well. What a relief!
12:31:00 AM
Thursday, August 22, 2002
Butch Report
Mother just called to let me know Butch's angioplasty procedure was successful. They did it early this morning before Janelle and Mother got there. He was groggy but motioned for Mother to come over and told her not to worry about him because he was going to be fine but to concentrate on me. Mother told him we were both going to be fine. Anyway, we're all taking care of each other and especially Mother who excels at taking care of people. She's a great mother. I've learned so much from her example. Too bad I didn't do more of it and stay as active and involved as she does. I am more like my aunt in that respect though and read and think too much. But we're all pretty funny!
The ibupropen I took last night broke the fever, and I woke up drenched! That's always fun. I feel better though since my fever is down around normal. There are just so many more times I'm going to be able to wash my pillow without it turning into one clump. It's a soft one I use with the bigger ones, so I can scrunch it around. It might be time for a new one soon. At least the sheets get changed often! Dr. Spigel said the fever is from my body dealing with the destroyed tumors (tumor lysis or necrosis - creepy word). So I do know all this is working.
11:18:00 AM
Wednesday, August 21, 2002
The Art of War
It's as if these tumors are fighting back. As Jim put it, they've marshalled together and are retaliating. Even with the Prednisone, my neck is sore and swollen, and I have some fever (100.4) and that constant, dull headache. I'm gaining a respect for this and realize why such toxic chemicals are needed to destroy them. This is making me look forward to the next treatment, so I can get more soldiers. That should tell you something!! As I keep saying, I am so glad I'm not having to think about school or a substitute. Thank you, Ralph!!
Butch is scheduled for the angioplasty tomorrow at St. Thomas. I'll let you know when I hear anything. Mother said she wasn't sure if she'd go or not. She hadn't decided when we talked.
11:42:00 PM
Butch Update
Mother just called and is home. She said after the doctor has studied the tests they did this afternoon, he'll let them know later on today whether he'll do the procedure tomorrow or Friday. He said this afternoon was too soon after what he went through this morning. She'll go up with Janelle whenever that is done. Mother is nervous but doing OK. As I said, I'm checking on her. Butch was sort of surprised about this since he thought he'd pulled some muscles. He'll stay there to be monitored.
4:31:00 PM
Butch
My brother Butch (for those of you who don't know) went in this morning for an angiogram since he was having pains in his chest at work yesterday. Janelle called Mother, and they've taken him to St. Thomas for balloon surgery because of two blockages. Mother didn't go to Horizon this morning, but Sarah Ann drove her to St. Thomas so they can be there this afternoon. He's had some problems with this before and got the heart disease genes in the family. I got the leukemia/lymphoma genetic predisposition. I had to make mine sound fancier.
I'm concerned about Butch. It's so hot in there where he works hard physically. He and Janelle are always lifting things and doing too much, too. I know it's much better to be active and exercise but worry about them anyway. I hate for Butch and me both to be going through things at the same time, but Mother rises to any occasion. I'm watching and checking on her all through this too. I'll let you know when I hear anything.
1:01:00 PM
Better
I slept four hours in a row - good sleep too! I slept from around 10-3:30, but that's an improvement over last night. I just had some Prednisone and crackers since it has to be taken with food or else! The swelling is down some and not so sore. I feel like I'm on a roller coaster or something!
How are you? What's going on? Inquiring minds want to know!!
5:30:00 AM
Tuesday, August 20, 2002
Bad Day
Not sure why but this hasn't been such a good day. I just feel bad. For some reason around two weeks after treatment, people sort of bottom out. Maybe that's it. I went to see Jim at Healthy Habits this morning and then by the vet's for a bag of cat food. This afternoon I went to the library and stopped by to see Dr. Spigel. The onc nurse asked me what I was doing there. I told her I wanted to ask him about my neck and showed her. They worked me in, and when Dr. Spigel walked in the exam room he asked if my neck blew out on me. He wrote a prescription for Prednisone and said I did the right thing to come by. I'm glad he said that.
I got a few things at Kroger that seemed sort of good like Jello, bananas, fruit and cottage cheese, and V-8 Juice. Nothing tastes good and I'm not that hungry, but I make myself eat. Who'd have thought I'd ever say that? When I do feel hungry for something, I make it or go get it. Sunday was a good day, and that food at Calypso tasted good. Nothing tastes like it normally does, though, and hasn't for a while. Wonder how long after all this it takes to enjoy food again and to sleep?
5:52:00 PM
ps
This is more like it. I went back to bed and was able to sleep some more. I alternate between my bed and the one in the guest room. The pillows and shams are arranged just so on it and there's a cotton thermal blanket on it, so it feels more like a nap there. I was there during the second sleep session and ended in my bed. There are some places I need to go and things to do today. I feel OK except for the swelling and soreness in my neck and might need to go by Dr. Spigel's to see if I need some more Prednisone to make it until Monday. Who would have believed this!!
6:48:00 AM
The Sleep Thing
Here I am up from sleeping a little at a time. I took a nap yesterday afternoon which felt so good THEN. Now I wish I were sleeping that well. I guess I did for a while. This is just part of it from what I understand. My neck is bothering me some since the Prednisone has gone from 40 mgs to 20 today. By Monday the swelling and soreness will have increased more. Dr. Spigel said the treatment will have the tumor mass reduced more and more until it disappears. I'm looking forward to that.
An odd thing happened today. I got an email from a feature writer for the Tennessean who is writing a story about local blogs and wants to talk to me. This is the way I decided to go with a weblog since it's a template (easy to do and free), and one of my former students (Amy Nickens) told me about it. Anyway, I told her I'd talk to her. I guess she did a search on Blogger.com which didn't really occur to me. This isn't that interesting except to people who care how I'm doing, and not always to them! It's just a way to let you know how I'm doing in a way I thought would make it easier for all of us.
Hope all of you are sleeping well and feeling good!
3:54:00 AM
Monday, August 19, 2002
Report
Everything is great!! Dr. Spigel said my white count was actually too high (from the shot) and that I couldn't get an infection now if I tried to. I lost some weight too which I think was from the week before and the Prednisone keeping the swelling down this last week. I'm sure it will fluctuate. He thinks treatment is going well and answered all my questions and listened really well. I do like him and feel very good about having him for my oncologist. That first week when I had that fever, nothing was OK, so don't pay attention to what I wrote then about a lot of things. I felt awful.
I still feel good. All of this is going to work out. I just feel tired and all from not getting enough good sleep.
10:31:00 AM
Appointment
I'm getting ready to leave for my appointment just to get blood work done and will add to this when I get back.
8:02:00 AM
Sunday, August 18, 2002
Out and About
I met my cousin Sally at Calypso's near 100 Oaks for lunch and we also went to Expo Home Design to look around. It's the first time we'd been there and really enjoyed getting ideas and seeing so much. Sally had some toothpaste to give me that she says is great. It's from the Essential Oils place where she orders a lot of different things. I just tried it and it has an interesting taste and good after-taste. It's supposed to work wonders, and I'm being really diligent about dental hygiene since chemo is hard on teeth, too. I want to survive this with the least damage possible except to the cancer.
Hope you all have a good week!
2:34:00 PM
Here I am
Thought I'd better get this on here before some of you get up. Still feeling good and planning to get out and about some today. It's the Prednisone that really reduces the swelling in my neck, and it's been working. That hand-sized mass is still there but much more compact and less sore. The rest of my neck is like itself and can feel the warmth of my hand on it.
Hope you have a good day!
6:47:00 AM
Saturday, August 17, 2002
Oops!
I forgot to write here today! Sorry I worried some of you. I'm OK. I feel good today and have gotten some things done. I took a nap this afternoon which helped too. I still watch too much TV but always have.
10:53:00 PM
Friday, August 16, 2002
Perchance to Dream
Still not sleeping long at a time. It's anywhere from 2-4 hours usually and 5-6 on rare lucky times. Sometimes I can go back to sleep and sometimes not. My neck is sore this morning. It's so odd how this has changed so much from the six years before. All I ever had were a few painless, grape-sized lumps in my neck until this spring. This is a mass.
Hope all of you have a good weekend! Isn't this rain a welcome relief! The grass was crunchy.
8:40:00 AM
Thursday, August 15, 2002
Feeling Better
This week is so much better than last week. That shot to build up my white blood cells must be helping. I'm also on Prednisone again, too. I've never had so many drugs coursing through my system in my life! My whole life put together actually!! I'll be glad when they're all out again and am drinking lots of water to help that along.
Just wanted to get something on here, so some of you wouldn't worry. It's been good hearing from you and hearing what's going on in your lives.
I got my hair cut this morning. I've felt like doing work around the house and had several phone conversations. This is much better!
8:22:00 AM
Wednesday, August 14, 2002
Activity
I had fun yesterday. Emma Hall, Cora Ross, Gwynn Kerns, and I met at the Chatterbox Coffee Shop for breakfast and conversation. It was really enjoyable to see them again. Later I went by Sisters to get lunch to take home and saw those men who go there every day, I guess: Warren Medley, Cubby Brazzell, Robert Porter, and Jimmy Porter. Jimmy and I compared notes, and he said he's going to have a stem cell transplant soon. I really hope that works for him. He's been through a lot. He'll be in the hospital 3 or 4 weeks in isolation. Our cancer support group meeting was last night, so I had a busier day than I've been used to for a while.
My appearance isn't as pale as yesterday. I have some color back now.
I'm getting my hair cut tomorrow. Hope I get to keep doing that.
1:18:00 PM
Tuesday, August 13, 2002
Appearance
I seem to be a whiter shade of pale now and since yesterday have dark circles under my eyes. I can already notice a reduction in the tumors in my neck after the Rituxan yesterday. That's exciting and remarkable. Rituxan is an immunotherapy that targets the protein on nhl tumors and breaks them down. It's been most effective for remission when used in combination with chemotherapy in the studies and trials. I'm taking Allopurinol to neutralize uric acid which is one of the by-products of tumors breaking down and to avoid gout in my joints.
I have major, expensive drugs coursing through me now. So far the two days of treatment have cost over $14,000!!! That's just the drugs! So let's see .... $14,000 x 6 = $84,000!!! Yikes! This will go way over $100,000 easily when we add in the CAT and PET scans, doctor visits, prescriptions, x-rays, ultrasounds, lab work, etc. It doesn't take long with 10% co-pay on our insurance to reach the out-of-pocket expenses when, thank goodness, my insurance pays 100%. The deductible won't take long at all next year to reach because I'll have to have scans after treatment at certain intervals. I'm glad we have Blue Cross/Blue Shield Teachers Preferred Care Plan as an option for our benefits. It really relieves my mind about all these expenses.
My temperature was normal this morning for the first time since Tuesday. That shot might already be working with the white blood cell production.
I cannot believe I didn't lose any weight last week when I had that fever and had to make myself eat. Sweets don't seem that appealing to me now, and I just ate food that was good for me and that seemed at all appetizing. Those weight-loss people are right when they say dieters have to eat enough food to keep their metabolisms revved up. I didn't eat enough to lose weight. Guess I can change that now.
If you're reading this and haven't been in touch, let me know. Some of you contact me and let me know you're checking the updates, so if you haven't mentioned it, please tell me! I like to know who's reading this. How are you doing?
6:45:00 AM
Monday, August 12, 2002
Rituxan
I'm just now posting because I've been busy today. After treatment, Mother and I went to eat lunch. Then I had a reflexology appointment, came home and had a few phone calls, then to Kroger, and back home for more phone calls. For some reason I felt better last week and today after treatment than later in the week. Maybe that won't be the case this time. I'm expecting a good week.
I had the 4-hour infusion of Rituxan today, and it went well. I had none of the side effects and problems like shaking, chills, and shortness of breath. Dr. Spigel said I would get a shot of Neulasta as part of treatment because my white blood count is low (3800 today/normal is 5000 and mine was 7600 last week). This is typical for chemo since it can't tell the difference between cancer cells and normal ones and gets some of those too. That's why the hair loss and other problems because hair follicles are fast-dividing as well as mouth, digestive, and other cells like that. The shot should help with the fever since it was mostly because of tumor breakdown but also the lower white blood cells.
Dr. Spigel was glad I called the office and was on top of everything. He asked if I told them when my treatment was and what I was taking because some of his partners' patients he talked to when he was on call didn't know. I told him I gave a background so they'd know what they were dealing with. They are really good there about explaining everything and giving brochures and hand-outs about the meds, so I was prepared. Of course, I ask questions too.
He changed his mind about the type of treatment because he said he thought this would be easier on me. I had the chemo by itself and the Rituxan by itself to see how I tolerated them, I think, since next time I'll have all of them at the same time. I've decided not to get too invested in the plan since it might change. Some of it might depend on my blood counts and other factors. Oh, one of the onc nurses said I probably wouldn't lose my hair unless I'm one of those people who is sensitive to medication. Well, that would be me. The next couple of weeks should let me know what that verdict will be. I hope it stays.
What they did today was give me Decadron again in the saline solution, Tylenol, and then Benadryl by IV which I thought would make me sleepy but no! That was to prevent allergic reactions. Next was the Rituxan which they began slowly and monitored me closely. As I tolerated it each half hour, they increased the speed of the drip. I sweated for about 3 hours of the 4. The nurse said it was probably my fever breaking, but it definitely went on until I was drenched and smelled mediciney.
To lower my fever and reduce the swelling, Dr. Spigel wrote me a prescription for (ready for this? we know ... what can I say?), yes, Prednisone! It's the smallest dose I've had so far, so maybe it won't be too bad.
Anyway, today went well, and I'm feeling relatively good right now. I'll try to keep this up from now on.
9:09:00 PM
Sunday, August 11, 2002
Well
I keep thinking every morning will be the day I feel better. How I feel is the way we feel when we have a fever - draggy, sleepy, achy, dull headache, etc. My mind feels fuzzy, too. I wish Dr. Spigel were sticking to the original plan of just checking my blood tomorrow instead of the 4-6 hour Rituxan IV. We'll see what happens.
11:05:00 AM
Saturday, August 10, 2002
Saturday
I felt better last night and this morning than I have for a while and got some laundry done. That felt good to get that accomplished. This aftternoon around 3:00 my temp went back up over 101 again. It's a pattern. When that happens, it's hard to stay awake, so I don't. I woke up in time to hear "Prairie Home Companion" but missed the news from Lake Wobegone because I forgot about it and listened to parts of a book on tape I fell asleep during instead. At least I caught part of it.
6:57:00 PM
Friday, August 09, 2002
Friday
I've felt better today and stayed awake all day. My fever broke this morning and has been closer to normal again even though it fluctuates some. I still feel sort of weak and tired but much better. For some reason my fever gets higher in eary evening around 5 for a couple of hours.
My problem is that I don't do sick well. With my short attention span, I'm ready to be finished with this and move on. I'm already bored with feeling bad. Guess I'm going to have to learn some patience or this will be a long haul.
3:33:00 PM
Thursday, August 08, 2002
Thursday night
I'm feeling a little better tonight. My fever went up again around 6 but seems to be lower now. Maybe that will be it. I hope so. This isn't fun. I am so glad I don't have to worry about school now and can be home to feel bad and recover. I don't know how people keep working during this, and I've only just started it.
10:32:00 PM
Phone Calls
My temperature stays between 99-100, so I'm sleeping a lot. If you call and there is no answer, I'm on the phone and know you called. If you get the answering machine, I'm either asleep or don't feel like talking. I mostly just feel sleepy and all from the fever, but my neck is sore where there is activity with the tumors, so the chemo is working. The swelling goes down much faster with the Prednisone, but I'm still glad not to have to go through that again right now.
I'll try to go eat something and sleep again. I can't stay awake too lolng.
9:33:00 AM
Wednesday, August 07, 2002
Fever
I just called the oncology office since my temp is 100, and one of the doctors on call returned my call very quickly. She was really nice, asked a lot of questions, and said since I'd just had one treatment, she didn't think it was my blood counts. She told me to take Tylenol and keep watching it and that it was probably tumor melt-off causing the fever. I told her mine were bulky and huge in my neck and that I had a sore throat. Since there were no other symptoms, she said she thought that's what it was and that I did the right thing to call. I feel better after what she said.
6:43:00 PM
3rd Day
I slept well again last night. Slept late this morning and then went to Mother's for a delicious vegetable lunch. She sent a plate home with me to have later too.
I have a slight fever (just 99) and sore throat and called the nurse since that is on the list, but she said it wasn't related to my therapy but sounded like something she had with her sinuses. She said to call back if it got worse. They do this every day and don't realize how scary it is for those of us who are going through it. I think I'll go take a nap now.
2:17:00 PM
Tuesday, August 06, 2002
Next Day
I had a good night and still feel good this morning. I slept late after getting up a few times to go to the bathroom since I'm drinking quarts of water per instructions from the information they gave me about these drugs. They can cause major bladder problems so I want to avoid that and keep a bottle of water with me all the time. Some people start off fine and then feel worse as they go along and others do the opposite. So far chemo is not even close to as bad as Prednisone. Hope that continues.
Cindy Draper said she would loan me her Jamaican hat with the dreadlocks, so if you see me around town with dreads, you'll know where they came from. Should I wear my boa with that? Maybe I'll just go for anonymity and wear a burka.
It's been great hearing from you! Thanks again so much for the concern, prayers, and caring!! It helps more than you know!
10:24:00 AM
Monday, August 05, 2002
First Treatment
I made it just fine and had no allergic reactions! Thanks for all your thoughts and prayers! I feel really good now, but the nurse said I'd probably feel wiped out the next day or two. The nurse was really helpful and explained everything thoroughly. First she put an IV in my wrist and dripped saline solution and then added an anti-nausea drug and Decadron, a steriod. Dr. Spigel changed my treatment for some reason. All he said was that he thought this wouldn't be as hard on me. Instead of FNP+R, I'm now having CNOP+R only one day every three weeks for six times. This means 6 treatments instead of 18. I'm not sure if that means this is more aggressive than he thought and is doing something stronger for one day or what. He didn't tell me but did doctor speak instead.
He did say I could lose my hair with this which I wasn't prepared for since the other wasn't as likely to do that. They put this cold cap on me which is supposed to help prevent hair loss. It felt good on my head. I liked it. Now I need to shop for a floppy denim hat with bangs and a wig that is so not me. I've already been every shade of red so might move on to other colors even though I think my students sort of miss the red hair which was that burgundy Aigner color when I had a terrible hair accident and then tried to fix it every weekend. They still talk about it.
For you fellow researchers, here's what CNOP+R stands for. C = Cytoxan (Cyclophosphamide) N = Novantrone (Mitoxantrone) O = Vincristine (Oncovin) P = Prednisone (which he didn't make me take and is going to see how it works without it - whining worked) R = Rituxan (Rituximab) The CNO part will be given each week with the Rituxan (a monoclonal antibody / immunotherapy) given four times, I think.
Anyway, so far, so good! I'll keep you posted! See how well all of you are doing here? Keep it up and thanks a million!!
6:48:00 PM
Sunday, August 04, 2002
Timing
Well, tomorrow is it. I know just enough to be nervous but not enough to know exactly what to expect which is probably good. Thanks to all of you who have sent email, called, and let me know you're thinking about me. That helps! I appreciate all your thoughts and prayers. I'll post something on here as soon as I can. There are some places I want to go after the treatment tomorrow and hope to do that. Mother is going with me, so I'll be in good hand there. :-)
About timing - my neck is sore and swollen again and beginning to affect my swallowing and the way I feel in general. I've had a dull headache all day, so it's good to be getting something to help with all this tomorrow. I need it.
10:25:00 PM
Saturday, August 03, 2002
Interim
Kari did really well but was sore and had to get over the surgery which is no small deal. They didn't sleep much at the hospital but are getting back into a routine at home. Kathy's stepfather-in-law had 12 inches of his colon and 17 lymph nodes removed during surgery and will have to undergo chemotherapy because they found cancer in one of the nodes. I hope everything goes well and that Charlotte gets her blood sugar under control.
I have felt so good the last few days since it's that interim between the Prednisone wearing off and the swelling getting so bad. I've been cleaning and getting things done at last! This makes me realize how bad I've felt for so long. I can't remember not being really tired for years. I'd have to rest after taking a shower! The house is a symptom of this. Instead of berating myself and feeling guilty for having a character flaw, I'm seeing this for what it is. I have pushed and pushed myself for at least ten years and had no energy left over when I got home. No wonder I collapsed in front of the TV and computer and/or took naps. It's gotten worse as the lymphoma progressed. I really do need this year off to rest and recuperate and am so glad I can do it. Eventually I'll get the house in order and like I want it. I'll do a little at a time and plod along. Then I'm going to take some people up on their offers to help. I do appreciate that so much, so watch out!
It's good to be busy and make progress and listen to audio books. Then day after tomorrow!! Yikes!! Actually it's good to know something is going to make me well again. I feel positive about it and trust Dr. Spigel. Thanks for all your good wishes and prayers! It means so much to know you care.
8:50:00 AM
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