Tuesday, October 31, 2006
The migraines are the major difficulty. They have three sources, all of which require different treatment. The usual migraine, from stress or God knows what, for which I have my migraine medication. Then the headache from the chemo which is slightly different and nothing much seems to work, since it's related to the nausea, that med works better than anything. Then since this treatment has thrown me into the middle of menopause (Groan, yes something else to cope with)...my hot flashes cause mega headaches which respond only to an herbal (Black cohosh) to reduce the body temperature. This all lasts for about a week. Seven days laster, I can set most of the pills aside and slowly resume life.
Bottom line: anything I want to do between now and next weekend, I'd better do today!! I'm hoping for enough of a reprieve to get out to see the girls in their costumes early this evening.
After my week of chemo struggles, my computer crashed. The motor in the hard drive refused to work. So....I lost all of my data on the hard drive. Unfortunately the most recent pictures were there...I lost tons of them. All of the hair cut pics...I have some of the totally bald one...one of these days I'll be brave enough to post them. But not today.
Since the DVD drive was already defunct and the computer is of course out of warranty, we decided to replace it. Rob is our computer specialist, so he purchased, formatted, and installed my new computer, only to have the fan on it freeze and eventually the entire thing froze. So two days into the new computer, it had to be returned for another. Rob did recover my hard drive, so the pics that had been in the camera and I had downloaded were rescued. Computers! Love the things when they work. But when they don't.... Today, however, this little baby is purring along very well.
I'm debating. Should I even post this?? It sounds...well ...complaining. I'm really not complaining. God has been good. One bad week, one good week is more than some people get. FOr that I'm grateful. This isn't going to last too terribly long either. Since #3 is under my belt (or in my veins!) there's only one more to go on this protocol. The second protocol also consists of 4 treatments. I don't know what side effects I'll have from that one. Maybe not as severe. This one is supposed to be the awful one...referred to by chemo patients as "The Red Devil" The fluid is actually red.
Enough. I'll try doing something much more upbeat next time.
PJDH
Monday, October 16, 2006
I still can't enter pictures. This computer doesn't have Moxilla Foxfire which enters the pictures on Blogspot much better than Internet Explorer. They just are not being read, although it says they are uploaded! I found copies in my email that I had sent out, so was able to get the pics stored on this computer. But, alas, further technical difficulties.
I suppose when my computer is up and running again, I'll enter a picture page of the progression of my hair. It's getting worse. The haircut worked well for sunday, but this morning the right side that I sleep on will barely cover the receding hairline (bald spot, actually). And on the top the part is about an inch wide. Today I could still more or less cover by combing backward (Not a Donald Trump overcomb!!) and having no part. But by tomorrow the right side will be gone and the top bald.
Solution: Tomorrow night Bradley is bringing his Barber clippers and off my hair goes. I'm thinking I'll do just a short male kind of cut--really short on sides and about half an inch on top. Kind of like a flat-top. Then I can still see what is happening, and use just my hair around the house, etc. But for going anywhere--the wigs are ready and waiting!!
It will be a metamorphosis in hair loss....I'll have to do a picture series.
God is good! Mercy and Grace, Lord.
PJDH
Thursday, October 12, 2006
I think I'm related to the little girl with the curl in the middle of her forehead. You know the one. When she was good, she was very, very good, but when she was bad, she was horrid. :) Well when I feel very very good, I'm too busy to blog. When I feel very very bad, I'm too sick to think well enough to blog. So I have to be in-between in order to be able to reflect and have the time to write.
It's 3:30 a.m. I'm not feeling very, very bad, just achey and sleepless. So....time to catch up!
Beginning today:
I went for my second session of Chemotherapy, but my white blood cells were too low. So instead they gave me two shots (The red has been low for some time) and sent me home again. But...I think because the red cells are actually up a bit, the white doesn't affect my energy...so I felt pretty good today.
Thankfully, I felt good because I'm shedding like a shaggy dog. I didn't notice until I washed my hair this morning. My hair isn't coming out in handfuls, more just little bunches of 5-10 hairs at a time (No! I didn't stop to count. That's a guestimate!) I had braced myself for chemotherapy today and believed that the hair loss would probably start a few days later, since there was no noticable effect after the first session. I was guessing 5-7 days after the second. Well...mine is going two weeks after the first. I thought I might have a Hallelujah breakdown...but I didn't. I just decided that the loose hair in my face was annoying, so I got a very short haircut. It gives me a different look which I wouldn't choose, but it's okay.
My computer has chosen this moment to go on the fritz, so the pictures I planned to download with my new hairdo are stuck in my hard drive at the moment. (I'm on a borrowed computer.)
Yesterday I went for my second chemotherapy appointment, but couldn't have it because my counts were too low. So today, tomorrow and Friday I get a shot to build up my white blood cells and then we try again on Monday. The only difficulty with that shot is that it makes my bones ache -- like the flu. Interesting isn't it that stimulating bone marrow to produce makes the bones ache. Is that what makes one ache so much with a virus -- the bone marrow is overactive?
Since I haven't written for over a week, I'll go back to the aftermath of the first chemotherapy session. After being sick as a dog (Hmmm shedding like a dog, sick as a dog...is there a theme to these metaphors?) for those three or four days, Bob called the massage therapist who has helped me before. She said that I might be reacting to dehydration and "prescribed" Gatorade. Voila'! Two days and countless bottles of water, Gatorade and even Propel, I felt much better. I do so have to watch hydration. I need to drink about a gallon of water a day -- yes! 128 ounces!! That's a lot of liquid, especially since coffee doesn't count! Although when I'm so nauseous, coffee doesn't taste good. I still like the IDEA of coffee, but the liquid itself doesn't go down well.
So after re-hydrating, I did fairly well for a week. The biggest problem as far as I FEEL, is that I have a constant nagging headache, ready to explode into full-blown migraine. Mostly, I can keep it in check with water or Propel (Propel does have a small amount of sucralose which isn't particularly good, but that's the smallest ingredient...so I'm using it, since watered down Gatorade just doesn't sit well unless I'm really dehydrated)
That takes us up to today -- or actually yesterday at this point -- wednesday, to be precise. And the low white cells. Skipping Wednesday's chemo does put my schedule off-kilter. Getting back to school can only occur after I have a reasonable white count otherwise every kids with a cold is a deadly weapon to me. Since I see 125 or so kids a day in an enclosed environment, 25 at a time, that's a lot of weaponry aimed at me. So I'll just skip it for now. :)
And that's been my very very good, and very very bad weeks lately!
I'll add pictures whenever my computer decides it will actually begin working again! I've re-started it a couple of times. No luck. I just did the old "unplug the thing" trick. We'll see if that remedies my problem or if my computer is dying of old age. (The silly things have a very short lifespan!)
PJDH
Wednesday, October 04, 2006
On Monday I really wanted to go to a conference held in Wisconsin. It's a bit over an hour from here and we weren't sure I was really up to it...but I had been eating a bit on Monday, so I decided to go. Rodney was driving. Bob and I rode with him. I made a bed in the back seat (no highway patrol reading this???) with a comforter and several pillows so I could lie down. I packed my emergency supplies...paper towels and a strong plastic bin, plus one of each med...just in case nausea hit again. It was funny. The back seat was full with just my stuff! It was a wise choice, however. I did not get ill, was able to rest, and the conference was wonderful!
Bishop Joseph Garlington was the speaker and was inspirational, entertaining, but most of all anointed. I'm paraphrasing some of the ideas and expanding or reflecting on others that apply to me. I hope it helps you as much as it did me.
There are two definitions for the word ought. The first, is a duty or correctness, especially in critizing. (One ought to do thus and so.) The second, is a desirable or expected state. (If I work hard, I ought to succeed.)
The pharisee was CAUGHT BY THE OUGHT. Jesus healed a woman on the Sabbath and the ruler of the synagogue rebuked Jesus for healing her on the Sabbath. "You ought not heal on the sabbath." Never mind that the woman had come for worship because the synagogue WAS OPEN on the sabbath and was not generally open on other days. Jesus wisely turned the tables on him by using the same phraseology, "This woman is a daughter of Abraham and she ought to be healed, especially since this is the sabbath." The Synagogue Ruler was "caught by the ought." Jesus used his own words to defeat him. The crowd recognized the correctness of Jesus' actions and freely rejoiced.
T.D. Jakes has recorded a sermon (and a movie, I think? If not, it should be!) about this same passage: "Woman, Thou Art Loosed." If you haven't heard the CD or read the book, I highly recommend it. Both are available through Amazon.com.
I've reflected a great deal on the thought of "ought to be healed." It's especially applicable right now as I'm in the throes of chemotherapy, the last step on my road to wellness. I do believe that we live in a multi-dimensional world. There's the physical reality that we see, an intellectual reality in our minds, there's a powerful psychological reality that affects both mind and body, sometimes it controls both mind and body.
But there is another transcendent reality - - that of the spiritual. We access God and angels in that spiritual realm. I contend that there is a complete world out there of which we only glimpse shadows or sense the depth of it. A reality that includes not only God and His angels, but also the fallen Lucifer and his angels.
It is the wish of Lucifer that we all be destroyed, condemned as was he. Using a parable and the metaphor of a thief, Jesus speaks of the conflict of these two worlds.
John 10:10 "The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have it more abundantly."
I've stated before in this blog, only partially in jest, that I think that this disease, Breast Cancer, comes from the pits of hell since both the disease and then it's current cure, strikes at the heart of all that is feminine and Godly! In fact, cancer of all sorts, the human body turning against itself, seems to me as though it must come from that netherworldly area.
So, although I shall continue to use all means within my power to gain wellness, the physical (medical), intellectual (positive thoughts), the psychological (maintaining a positive attitude), I also believe that God ought to heal me: my reliance on the spiritual. And of all worlds, the spiritual is transcendent! Of that I am sure!
Hebrews 4:10 "Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need."
I love the way children come up with truths. We were driving in the car the other day and out of the blue my very wise little six-year-old granddaughter offered this piece of advice, "Grandma, when we pray, we can't just ask God for what we want."
"No?"
"No, Grandma, that would be telling God what to do. We tell him our problem and He sends an answer. Sometimes it isn't even the answer that we want. But it's always the right one."
AMEN! Today, God I need Mercy, and Grace to help.
PJDH
Tuesday, October 03, 2006
The girls and I worked in my crop room tonight and made pom pom scarves. We had lots of fun with needle and thread!! M2 did rather well with her first sewing project. M does well with needle and thread. Actually she can thread the needle better than I can! Young eyes! Even M still needs help with knots. And M2 does tangle her thread from time to time.
The photographs are taken by the girls too. M has been quite good at pictures for a couple of years now. M2 is just taking up the habit! (I'm addicted to photos -- can you tell?)
As you can see, my hair is still intact. No change at all that I can tell. I'm finishing this on Wednesday and this is day 15 of a migraine. That seems to be the theme of chemotherapy for me: headache. Nausea is gone. I'm eating well.
God is good!
Phylis
Monday, October 02, 2006
This blog is actually out of order. Stuff from the previous weekend...I wrote only a bit that Sunday. I was really tired and the headache had begun.
So...for some happier stuff.
Hair loss hasn't occured yet. Though some say it takes a few days after the second infusion for that to occur. I'm pretty much ready for that. My sister was here (9 days ago now) and we went "cranial prothesis" shopping. (No, I may need a new brain -- I think that would be cerebral prothesis -- but for the vocabulary challenged, think cranium, top of head!) :) There's a hint at the top of the page!
It was fun. Sisters are like that...anything from the grueling to the trivial can be fun when done together! A wonderful place for wigs was "Lulu's Wiggin' Out" in our own Algonquin. Right on mainstreet. A terrific selection and really, really helpful people who let me try on nearly every wig in the store! It's a tiny shoppe with an enormous inventory, so the shop looked like me on a tear through my closet by the time we finished two hours of wiggin' out! I did buy two...pictured above.
So...a word to those who know me: If I show up in that darker and shorter one, it means the hair has fallen out. That's my new look. After all what's the fun of a new wig if it doesn't have some fun attached! I was looking for an even shorter spike in about the color I have now, but couldn't find the right one. They actually had the cut and could have ordered the color, but every wig company has slightly different colors. I found that colors very close just aren't the same. One I would like a lot, the other not at all. The strawberry one almost like mine now has to be worn with a hat or wig, but gives me a more 'normal' look, for those days when I want things to seem normal.My 'old' Ellis friends will recognize the hat I stuck on the longer wig. Remember my hat days? (Before I was asked to cease and desist.) They're comin' back. I have to rediscover my hats!
But who knows? My 4-year old granddaughter insists that wigs are unnecessary because my hair may not even fall out. (T'would be nice if she were prophetic!)
Hopefully!
PJ
I haven't written because I haven't had the emotional (for the beginning of the week) or physical (end of the week) strength to do so. Blogging is good for me, but I have to be "in the groove" and this time I lost my groove. Isn't there a kids book about somebody getting their groove back? Seems it was a camal....the only "lost groove" story I could find referenced was NOT a kid's story! Anyway, this morning I feel as last back to semi-normal...enough sanity to reflect on what's happened with a headache only lurking in the background.
Ah, the joys of chemotherapy! If I had a choice, I'd take surgery, any day. Such a choice: Poison? The knife? Ehh! The actual process is fairly benign. One simply sits while the stuff drips in, drop by drop. I had had a migraine for a couple of days before chemo and hesitated taking my full migraine med. MISTAKE! So that I was still headachey on that day. That day and the next, I felt slightly flu-ish and the migraine accelerated slowly .
Then on Friday, it hit! The full whammy. For the next 48 hours I could drink nothing and even so my stomach did full-fledged convulsions every two hours...on the hour. I finally managed to eat a bit of banana to get the anti-nausea pills down. Finally sometime Friday I realized that the anti-nausea was reacting to cause the migraine. (At this point nothing produced relief) After calls to the doctor and changing pills three times, I managed to drink sips of Propel during the night Saturday night...which saved me the joys of a hospital visit and intrevenous fluids. Then Sunday morning, I added water and finally iced tea to my diet of bananas and Propel sips. By evening I had eatten a few bites of rice, a bit of soup and even a couple of bites of chicken....Hurray!
Today I managed oatmeal and a piece of toast for breakfast, so maybe the stomach gymnastics are over for this round. The Dr. did tell me to be sure to taken the anti-nausea stuff a couple of days before the next infusion of chemo. That might stave off the fury of my stomach. He did say that only about 20% of patients have this reaction to what I'm taking. (Sure glad it isn't the stronger stuff! Now there's a reason to rejoice)
Only three more infusions of this (the Red Devil plus some other, I don't have the names down yet). Then four of the next regimen. I need to do some research on the next one and see what I can expect. If it's like this one, ugh! I suppose the upside is that I might lose a few pounds. . . hard way to go though. I think I'd prefer Weight Watchers.