Sunday, September 30, 2007

I'm wired

After weeks of laying about having no energy, tonight I realized that it is back. I left the house this morning about 10:30 to go the the home improvement store and then to the craft store. G called me while I was still at the home improvement store to see if I would like to meet for lunch. That sounded like a plan to me.

After lunch, I did make it to the craft store. I got home after two in the afternoon. It probably would have been a quicker trip, but I was unaware that every Mary, Melissa and Susie (along with Tom, Dick and Harry) was into making homecoming mums and boutonnieres. I couldn't believe the sheen number of teens in that store.

Anyway, after I got home, I set up my telephones. I had to get new ones because the battery on the old one only lasts about 5 hours. I'm tired of it hanging up in mid sentence! I then went upstairs to my craft room (no B you cannot move back home). I finished a purse that had been in the works for at least ten months, and then I put the binding on Doodle Bug's baby quilt.

Normally, I would have been dead to the world on the couch by nine, but here is is 12:46 AM(!). I am wired. My usual potion of Tylenol PM isn't working. So here I sit, playing on the computer.

I will probably pay for this in spades tomorrow, or maybe not. I can't really predict. But I am going strong. It's amazing that I have so much energy left!

Also after my shower this evening, I realized that the burns are really gone, and all I have left is a little peeling skin. I could begin to think about reconstruction. That would be a good thing. I'm tired of looking for body parts to leave the house with. They are also HOT! Folks, here in Swampland we had a "cool front" go through yesterday. The temperature was still about 90. It is just a little drier.

So now I guess I will wait until I see the oncologist to ask his opinion of reconstruction.

One just can't have energy for too long, can one? Oh, and I guess my references of "today" are actually a little off since it's already tomorrow.

Thursday, September 27, 2007

Pre-need, and not because of my "condition"

My friend Jim died on Friday afternoon. He was cremated, and tomorrow is the Memorial service that we unfortunately can’t attend. I can’t help but believe it was a blessing. He was miserable, and it was killing is family. There are those times when death is a true blessing - although it can be one in disguise.

He will be missed terribly. He was a really great man. That’s just not my opinion, he was an educator who was dearly loved. He already has two scholarships established in his name. I think that is just the tip of the iceberg.

The timing of his death is unusual though. G and I sat right here on Saturday morning and arranged our own prearranged cremations. Some will think this is morbid, but I have been through my mother’s death with no pre-planning, and then my dad’s with supposed pre-planning. Both were sheer hell.

With my mother, the mortuary played heavily on emotion, and the could. We were sold a mausoleum space (actually two - one for Dad), a very upgraded coffin, and a peignoir set for her to be entombed in. She was too good for regular clothes. Didn’t we want the best for our loved one? I look back and I am so appalled. But our emotions were so raw they could have sold anything. But they were so solicitous.

With my dad, he knew how emotion ruled at the time of my mother’s death, so he set his and V’s funeral. Bless his heart. He didn’t know all of the things that remained to be done. The process was terrible. I didn’t have to chose the coffin, I had his suit ready, and he chose how many escorts and so on. Too bad it didn’t work that way. The obituary didn’t make the paper before the funeral, so no on knew. He was living here in Swampland instead of San Antonio. The mortuary also didn’t call the cemetery in time, so they were not able to open the crypt so he could be put in after the "ceremony."

So - we had just the immediate family there at the service because no one knew about his death. We didn’t need the escorts for the procession to the cemetery because there would be no opening that day. To make the story short, even though it was all decided, "pre-need," I still had to pay over $700 above what was already paid for. I wrote the manager of the mortuary to tell him how horrible the funeral was. I got my money back. As I should have.

So G and I went with a group I had heard about. It is pre-need. Everything is paid for in full. We will be cremated. We have the urns, and everything is decided. The survivors can plan a Memorial service. No fuss, no muss, and best of all no morticians!

Jim, I imagine your ashes will be scattered about 1 mile from where mine will. Rest in peace. I’ll join you in enriching the land someday.

Wednesday, September 26, 2007

The J-curve

For a while now, I have been reflecting on the philosophy we had been pushing in public education (at least in the school district where I taught) that we must enhance the ego of out students. We had to provide them success. They were not responsible for their own success.

At one in-service I attended (oh, I do love in-service meetings, not!) the leader expounded on the merits of the J-curve over the old reliable, naturally occurring, bell curve. Her rationale was that these children today will be those who will be working when we are retired. They need to have successes in their lives.

The J-curve means that there are lots and lots of A’s, B’s and C’s, but just a few (maybe one or two out of one hundred and thirty) F’s. The children are all successful. They FEEL GOOD about themselves.

The problem here is that very simply put - they did not earn anything. There is no responsibility on the child. There is no responsibility on the parent. The teacher is the one who must make that child feel successful.

Well, I guess according to that rationale, I was a lousy teacher. I am a strong believer in personal responsibility. As much as I loved the subject matter, I wanted my students to leave my class knowing HOW to do things. If they chose not to do any work, they deserved to fail, and in reality they knew it. Padding grades did not help these kids.

One of my special memories was one boy who did not want to dig for anything. Since reading was such a big item on Texas’ standardized tests ( you know those tests - they tell you exactly how much a child has learned that year), we were encouraged to teach reading across the board. I would do an activity called "Directed Reading." It was to take the passages in the text book verbatim leaving out key words, or if really advanced, asking a question about the passage. Gasp!
This fellow didn’t want to read to find the answer. He wanted it given to him. I began using my questioning tactic designed to make (and help) him think things through. He was so frustrated he almost cried. I kept prompting and supporting. When he discovered the answer on his own, you could see the pride breaming from his so brightly he lit the entire room. He found success, and it was not easy. He did become an independent learner that day. In my class, at least, he became a true leader. He and I were proud. It was a good feeling.

I look in the paper about some of the products of that philosophy. This year alone, there have been six football players at University of Texas who have been arrested (all for felonies believe). I cannot help but think they are a product of the something for nothing J-curve philosophy. I have heard rumblings of leaving the J-curve. I hope so.

Like most of the "new revolutionary" ideas I saw in teaching, if you ride the merry-go-round long enough, there is nothing new. It all comes around again.

Monday, September 24, 2007

Light at the end of the tunnel

After nine months of dealing with my diagnosis and the ensuing treatments, my house is a total wreck. I suppose I should not use that as an excuse, but honest - it is!

Of course fifteen years ago when I was nursing a broken ankle (boy THAT is another story), my mother in law informed me she kept a perfect house with her broken ankle - wheel chair and all. My orthopedist cautioned me that if I re-broke that ankle, there was no more bone left there to put another screw into. He would have to take bone from the hip to graft to the ankle. That was enough for me. I was going to be as careful as possible.

My mother in law and I have marked differences in where housework lies in the scheme of things. I decided long ago that my kids were much more important that a spotless house. I found that if I did things with the kids, by golly, the house was still there. No little gremlin came in and did the work for me. I could still get it done. She on the other hand, spend all her waking hours cleaning.
Now, she could have unexpected guests anytime and not feel uncomfortable, while I would be cringing.

But back to my house. I have finally been getting enough energy to begin tackling the clutter. It is absolutely amazing how fast "stuff" gathers. My dining room became a storage area. Don't know where to put something, that's OK, put it on the dining room table. No more room there, put it on the floor by the table.

Yesterday I got that mostly cleared out. In fact, we even had dinner in there last night. My next project is the office. Amazing what you can put behind closed doors.

I really am seeing a light at the end of the tunnel! That may be because the clutter it out of the windows!

Sunday, September 23, 2007


When this schizophrenic ride I was put on with this cancer sends me plummeting into the throes of despair, I should always remember my friend, and distant relative, Jim. I have written about him before. He has ALS. The only thing is that now he is really dying from ALS.

I cannot imagine how he felt when he received the diagnosis. You KNOW you are going to die - and soon. He was diagnosed about three years ago. Things progressed fairly rapidly from then. He first lost the use of his left arm. Then it was his right.

At last year’s Wide Spot Community Club Christmas party, he was there. I hadn’t seen him in a while. I was shocked to see that he had to be fed. He couldn’t hold a fork. I was thinking about how sad that was.

Last week when we were at the SSB, the neighbor who lives between his place and ours told us that hospice has said it is a matter of days now.

In my Pollyanna world, I assumed that his death would not be painful. After all, in my thinking, ALS is a disease of the nerves. They stop communicating with the muscles which leads to paralysis. Yeah, that is true, but the pain receptors don’t quit working. He is in pain, and alot of it.

Jim had been on methadone. It wasn’t enough. Hospice wanted him on morphine. Jim didn’t want it. Well, he was outvoted.

A newborn baby can do more than Jim can do. He is able to turn his head a bit to the right, but that is it. When he is moved, his head must be supported or it will drop back - like a newborn.

I think of Jim often these days. His mind is still sharp - save the morphine fog I’m sure he is in. He has hours and hours to think about his impending death. His family is all with him now, and I hope that brings him some peace. I hope it also gives his wife some respite from the care she has shouldered by herself all this time - alone except for the few hours hospice is there.

I know that Jim is ready for the future. He is that kind of person. Before he plunged even deeper into his paralysis, he had a motorized chair that he could control. He wanted to attend church. The men in his congregation even removed the last pew in the little church so that he could come in. I don’t think he ever made it in person, but I am sure he was there in spirit. I really think Jim is ready to meet his God.

Still I realize I am weak. I bemoan little things about my plight. I wish I had his strength.

Thursday, September 20, 2007


The results are still out, but I think I stumbled on a great solution to my ever deteriorating skin. I have been rubbing Silvadine cream on my skin religiously both to heal and stop the pain. While the results were good - healing did happen over weeks time - there was still some pain and a lot of tightness.

I was sitting at my vanity last night and my eyes fell on the vitamin E oil that I bought after my mastectomy. The oncologist suggested it would help heal the incision. I know the radiation oncologist said not to use anything greasy, but I think that was when the burns were so oozy. What I have now is dry - very dry. So in my mind, dry plus oil equals GOOD!

So I sprayed some on my side and chest. I was still hurting when I went to bed. The real burn felt like a burn, but this morning, the pain has abated quite a bit. There is not nearly as much tightness.

I had used the oil on my neck earlier this week. It was almost healed then, but was itching terribly. My neck looks great! It is almost normal. Now I can only hope I have the same thing happen to the other burns!

The oil is vitamin E and baby oil. I figured it couldn’t hurt - at least too much! I shall continue with this experiment.

Tuesday, September 18, 2007

What I did this weekend

I don’t know what to do with myself! A whole day to do whatever I wanted. No treatments! What a luxury.

The weekend went way too fast. My sister-in-law really can’t understand why going to the SSB (if I knew how to link, I would send you to the post that explains why our little place is called Stings, Sticks or Bites - but alas I am too illerate) would be a welcome break as well as a way to celebrate ending treatment. It was great. I could just become a complete vegetable - which I did! I wasn’t ready for the weekend to end.

I have had another break-down of skin, and I fear there is another on the way. Even though I am using the soft sports bras, there is enough pressure there that it does cause problems. I know the answer would be not to wear the bra, but I just can’t do that in public! Thank goodness for the new prescription of Silvadine!

My energy is returning. It is really something different! I have been so tired for so long. I was tired before I was diagnosed, and the treatments, while not making me ill, did sap my strength. G was telling his parents that I will be doing something and suddenly say "I’m tired, I’m going to lie down." It is true! That is the way I was. Things are getting better. Perhaps I will be able to shovel out the house now. That would be good.

I am anxious to have my next appointment with my oncologist. I want to know that enzyme level that measures tumor activity. I like to know that number! Right now, it is great. I just want it to stay that way.

Tuesday, September 11, 2007

Grandma K - the roller coaster! Thrills of a lifetime

This roller coaster called cancer treatments that I have been riding is exhausting! I have just come from the lowest point of the ride and am cresting a high hill. Things are going so much better now.

I have three more radiation treatments. My skin is almost healed from the past treatments. I still have one fairly bad lesion on my neck that requires treatment with the cream, but the underarm is completely dry. That in itself is good news.

To get said underarm healed required almost the entire tube of silvadine cream. Since I am still working with the 2 x 1/2 inch lesion on my neck is going to require more of the blessed cream. I filled the prescription on September 4. I called it in two nights ago. My prescription insurance denied the refill!

I was able to keep my panic to a minimun. Surely they could tell by my other prescriptions I am a cancer patient and I must have a good reason for needing the ultimate lesion cream. Good grief people, I GLOW in the dark after all! I called last night to check on the progress. They have relented. I get more cream to soothe this little bugger that's left. Now if only the new area that is being blasted doesn't begin to drip off of my body I will be doing just fine, thank you very much. I may not even need that whole tube!

After two and a half months, the steriods seem to be leaving my body. Almost since I began chemo, I was eating like a bird. (You do know they require LOTS of food, right) Simone needed to either keep moving or stay in her crate because if she got too still . . .

My appetite is under control again. I was beginning to wonder. I was the one who went into chemo with the attitude of perhaps dropping a few. It was certainly one way to deal with what was going to happen. I mean if you HAVE to be poisoned, it may as well have some good effects.

I was so wrong. I gained about 30 pounds. The little Indian radiation oncologist said it would change, but I thought she doesn't know my body. It loves to hold on to pounds like gold. But she was right. I may be able to drop all that.

I hope this crest of the hill doesn't drop again into a plunge. I hope I am really "pulling into the station" and this ride of treatments is really coming to an end, and I can take on the role of cancer survivor.

Saturday, September 08, 2007

Some disappointment

I am rather depressed. I got the news that instead of having my treatments end on Monday, I have until Friday. I had my heart set on only having 33 treatments. The radiation people never told me that - ever. I got that from Dr. Poison, my oncologist. It shouldn't cause me so much anguish, but I really want this over.

I am tired of all of this. This is nine months this has all been going on. I want it OVER! I am finding myself falling into a depression whenever I am alone. I don't want to constantly be dragging my family down with my complaining. I have a pamphlet with the phone number for a group who talks to cancer patients. I didn't think I needed it, but I am reconsidering that idea.

I can't believe how much my fellow radiation patients have been there as a listening post. That is coming to an end (even though not soon enough in reality), and I think I need someone.

My burns are still present, but the neck lesion is half what it was. That is good news. I am just hoping the new intense radiation on the masectomy scar doesn't bring the same effect. I continue to work with it.

This cancer thing has taken nine months out of my life. I guess I am silly enough to think after treatment ends on Friday I will have my life back. I know I won't, but perhaps there will be a little more time for me.

Things will be better. I know that. Thanks for listening!

Wednesday, September 05, 2007

I love Dr Poison now!

The visit to the oncologist yesterday was indoubtably the best one I have had. I felt we were really on the same page - finally.

When he saw the burn on my neck, he immediately suggested that he prescribe Silvadine cream and Lidocane jell. I jumped on that. This time, he even gave me some sleeping pills. It was no longer the suggestion to try Tylenol PM.

Since I had a dental cleaning, I decided to get the prescriptions filled immediately and pick them up on the way to the dentist since the pharmacy is next door to the dentist. I slathered the Lidocane on my neck so I could stand the drape on me. It was good.

When I got home I tried the Silvadine Cream. I wasn't expecting much. Peggy (my new "friend at radiation) said it didn't help her when she was having this radiation. She extolled the virtues of the Lidocane. I couldn't believe how soothing the Silvadine was immediately. I think things will be getting better!

I was amused when Dr Poison asked about joint pain from the Femara. I answered "who can tell. Since I already have arthritis, am taking steroids, and now Femara!!" But we will see. I seem to be tolerating it fairly well. My hot flashed have increased (which he said can be controlled), but I am not miserable with it all.

My Ca-27 was 19. He said that was right where we want it to be. That was good news. So far there are apparently no new tumors to worry about. Perhaps all this will be worth it.

My next adventure, after healing from the radiation burns, will be to pursue reconstruction. One more path to explore.

Monday, September 03, 2007

Ho hum

Tomorrow will be a really busy day! I begin with the oncologist, and I intend to make him work for a change. I am going to ask for his advice on my neck which has begun shedding skin in the fold of my neck. I think the real purpose of the appointment is to determine the date of the next scan and look over the blood work. I just hope their computers are up for this appointment. I swear they don't have a paper chart!

After the oncologist, I will kill some time at the medical complex because I don't want to drive home for what will end up being just a few minutes. Then will be the first of the new radiation treatments here in the last of it. My neck and underarm should be spared some of the radiation. I just have to decide how I am going to treat the area with either the aloe or the cortisone cream. I'll work that out.

Then in the afternoon, it is off to the dental hygienist for a cleaning. At least that shouldn't be too much of a strain. Most of the teeth are crowns! I don't think they can find a disaster that will cause me to be sent over to the dental side again. Those were interesting days!

I may have too much going on for one day. I don't like to admit that I just can't handle that many activities in a day, but the sad truth is that I can't. I will probably be wiped out tomorrow afternoon!

What a mundane life! But I intend to enjoy it.