Cancer is Tough

I have new symptoms. I think they are from the carcinoid cancer or maybe my stomach is doing something new. I want this to be a true account, so here goes.

Now I am vomiting. A few times this year I have gone through a season of feeling queasy in the morning. I only notice it between 7 and 8 am. Then by 8 o'clock I'm at work and too busy to notice. On Thursday I suddenly vomited at 7:15 as I was about to leave for work. I felt very sick as I called for a substitute. A teacher has to punch in a bunch of numbers and answer at least 10 questions, just to get a sub to show up. I was shaking and had sweat dripping off my chin as I pushed buttons on my phone. I just wanted to get the call completed before I was sick again. Then I went back to bed until 1:30.

Today (the following Monday) I had a strong pain in my upper right quadrant of my abdomen at 7:20. It is a few centimeters distal of where my gallbladder was. I got in my car and felt the pain again before I backed out of the driveway. I pressed on the painful spot, and spit up into the trash bag about 20 seconds later. I went to school and was not sick again.

The pain does not seem to be where my stomach is. When I had an ulcer the pain was left of the mid line; this is to the right. I do have acid reflux, so I hope this is just some variation of that. I have never vomited from reflux, and I usually feel the burning in my stomach or throat.

I will see my internist on Wednesday.

Also, I have developed a feeling that is like a shudder of pain and weakness. I have felt it several times this month. Once when I had an episode of carcinoid syndrome, I stood up and had the strongest occurrence. Pain and weakness ran down through my thighs. I almost felt as if my legs would give out, but the weakness lessened as it reached my knees, and then it disappeared. That has happened before. This weekend, I had that sensation develop in my shoulders and run into my back. Again, I recovered because the pain weakened as it ran on down my body. What happens when it doesn't fade away?

Our God is an Awesome God!

Our God is an Awesome God
He Reigns from Heaven Above
With Mercy, Pow'r, and Love
Our God is an Awesome God!

Our God is an Awesome God
He Reigns from Heaven Above
With Mercy, Pow'r and Love
Our God is an Awesome God!

Friday afternoon I was working in my classroom at 3:50. I had expected to go home at 3:30, as soon as an IEP was over. That's a special meeting for a Special Education student.

I was looking at the clock, making sure it was right. I was feeling OK (to my amazement), so I went ahead and wrote on the board preparing my requirements for Monday. I had my Homework, Agenda, Warm-up, Objective and the Standard on the board. That should make it easier to get started on Monday morning. I left school at 4:10.

I got home 25 minutes later. I came in the door and stumbled into the living room where I sat on the loveseat and petted the dog for a few minutes. Then Spunky stretched out beside me to take a nap, and I fell asleep, also. My condition had changed on the drive home. I couldn't even walk straight or stay awake. Somehow God preserves me while I am in my classroom.

When R came by about 5:00, Spunky got super-excited to see him. I staggered into the bedroom, pulled a nightgown over my underwear and slept until 7:40 pm. I got up at 8:40pm and felt pretty good. K and I watched some TV and talked. I went to bed about midnight.

October Begins

Hi!
I've been teaching for 5 weeks so far and progress reports are due. School is in full swing. We have done 3 labs in seventh grade, and our famous cell models will be done on Tuesday.

This is where I begin to wear out. Always have, but this year is different. I have had to spend Saturday resting all day--except for doing laundry. Last week I stayed in my nightgown until 5 pm. This week I slept until 12:49, but I was bathed and dressed by 2:00. A small victory.

I don't know which of my ailments is getting me down. My cancer marker is low, but my body is still battling the disease. The battle makes me fatigued. The degenerating disks in my neck and lower back cause strong pains that radiate out from the spine. I can recognize those pains. The nerve pain in my neck is the strongest pain I have. My arthritic right arm and hand ache all the time now, and I never had arthritis pain until February 2009. I know people with arthritis are supposed to exercise their joints, but at the same time are to rest and not do too much.

I have two autoimmune diseases called Sjogren's Syndrome and fibromyalgia. Sjogren's has been attacking my salivary glands and lachrymal glands for 23 years. It's primary symptoms are dry eyes, dry mouth, and musculoskeletal pain. My fibromyalgia pains come and go. Before I had a diagnosis, I would have strong pains in my arms and legs that I can now recognize as fibromyalgia, but what I feel today is aching all over. I don't know which condition is making me ache--not everyone has five choices to pick from to figure out why they are hurting.

So there you are, all my symptoms. I feel like "These are the times that try men's souls." I wonder if I should take the whole weekend off from working in order to go back to school on Monday feeling refreshed. I usually work from 2-6 hours over the weekend to get grading done. And I am way behind right now. It's almost impossible for a teacher to feel like she is on top of everything. There is always more we could do to help more students achieve. I hear great teachers at work saying they love teaching, but the grading takes them until 1 am some nights. What about our health?

I appreciate your prayers. This is the time that takes great faith; when you have to press on with no big chance for improvement. Like my rheumatologist said, "It's not going to get any better" when speaking about my degenerating disks. I think that sums up the whole situation. Sometimes I envy the patients at the Chou Family Cancer Center who look so very sick that you know no one expects them to work for a living. Sometimes I just want to sit back in a recliner and be pampered, instead of jumping back on the freeway to hurry home again. Somebody drive me home and feed me dinner. But I stop by Carl's Jr. for food and fall asleep at 7:00pm. At least I don't grade papers on those nights.
Sharon

Update 9/26/09

I have good news!

I saw my oncologist on Tuesday. My Chromogranin A is down to 27 again! I guess it just went up because of the testing I went through. So it's gone back down to normal for the third time in 5 months.

On the way to Orange County I was singing along with one of my favorite CDs for comfort. I was imagining myself going through another procedure with the music to calm me. On the way home I was singing on my way rejoicing!

Jesus my all to Heaven has gone! Glory Hallelujah!
He whom I fix my hopes upon, Glory Hallelujah!

I want a seat in Paradise! Glory Hallelujah!
I love that union never dies, Glory Halleljah!...

I know that my Redeemer lives! Glory Hallelujah!
What comfort that sweet sentence gives, Glory Hallelujah!

Shout on, pray on, we're gaining ground, Glory Hallelujah!
The dead's alive and lost is found, Glory Hallelujah!

I love that song! It's from Celtic Joy, A Celebration of Christmas by A.M.E.N.
They sing in English, Irish, Latin, and Greek.
I like this CD so much, I imagine it being played at my funeral as people come in to be seated. There are three songs about heaven. It isn't Christmas music, but hymns from 100 to 800 years ago. It would be nice to listen to at Christmas time. Some songs are plainsong. There are three people singing three parts; I sing along with the middle part.

Love,
Sharon

Update 9-6-9

Hi,

When I was at the Medical Center getting my Octreotide injection this week, I got my lab results. The nurse has my whole chart there at that time, so I can see what both doctors have written, see my labs, read my surgical reports... I can do all kinds of cool stuff while we wait 45 minutes for the medication to arrive from the pharmacy. I have the delight of using a frozen drug; so we wait until the stuff thaws out and gets mixed up. Then the pharmacy technician shows up gently shaking the tube from side-to-side until the nurse takes it from her. It's a 5cc injection given in the hip and it's good for 28 days.

Anyway, my numbers are Chromogranin A 109; Gastrin 210. Gastrin is normal 0-100 and CgA is normal 0-50; so my numbers are a little over double the normal amount.

I will see my oncologist on the 22nd of September. If I don't hear from the surgeon's office by then, I will tell him about the EUS. Before then, I will email the PAC and ask about the procedure. I don't want to tell the oncologist that the surgeon's office slipping up. I would like to call before then, but I don't remember to call from work. I'm too busy with school stuff, and by time I get home everyone at the hospital is ending their shift.

I've noticed my attitude toward having another exam done has become that it's a nuisance to go through it again. Actually, the doctors might be finding my third tumor and getting it out of there. We know there is a tumor(s). It's just that i went through this twice during the last school year, and the doctors didn't find anything. I missed two days of work which uses up my sick leave.

This is different than the first tumor in spring 2008. Now I'm not in such a big hurry to find the tumor; I've been convinced that it won't make much difference if they do. If it's in the intestine, the doctors can remove it. It it's not there, I just keep taking medication. If the tumor is in the liver, the surgeon can't do anything unless the tumor is big enough to stick a needle into it. He says it needs to be about a centimeter before he can see it. Nothing the doctors can do will save my life, so it doesn't seem such an imperative to get tests done.

I have gotten my oncologist's attitude. There's not much we can do but manage my condition for as many years as possible. Carcinoid is a weird cancer. You may be OK until the time when your particular case flairs up, and then you go right down the tubes. But then, the docs can take out a foot or two of your intestine and you're good for another year. At least you're still alive--you might not be too good, but you're still here. Some patients take 10 or 15 years to die.

A Story About My Mom or Maybe it's About God

This memory came to mind this morning after a season of prayer. I took that as an OK to write about it.

In July I was giving myself 3 injections of Octreotide per day. (I have to do that before I have scans done.) I went into the bathroom one afternoon for my shot. As I uncovered my belly, I could see the ring of bruises around my navel. Since the shots come every 8 hours I get quite an assortment of different colors of bruises. They are usually little green and brown bruises within a day. Sometimes I don't bruise.

As I was looking at my belly, I felt my mother's cools hands covering the bruises in the right upper quadrant around my navel. A memory came rushing back.

There was a time in my childhood when I had to have shots given because of a lung infection. I had gotten the first shot previously, and Mom went with me into the room when we came back for the second shot. I remember lying on the examining table, so the nurse could inject me in the hip.

My mother saw that I had a bruise on my hip from the previous injection, and she placed her hands across the bruise. It was cool and comforting.

That was the exact same sensation I had when I went to give myself my shot that afternoon. I could feel her cool hands. It was just as she had done; she had placed the fingers of her right hand on the bruise, and laid the fingers of her left hand on top of the right hand at the opposite angle. It occupied a small space, not the area of a complete hand.

So, when I felt that coolness on my belly, I had a comforting thought that my mother had seen what was happening to me, and she cared. That, maybe in heaven, she had prayed I would have comfort in the midst of getting so many injections.

Love,
Sharon

Update

Hi,

I've been delaying writing this for a week, waiting to get the results of my blood work from my surgeon. I haven't heard anything, yet. This is Wednesday; I was supposed to get a call on Friday.

I saw my surgeon last week on Aug. 17. I hadn't seen him for 5 months, since my last scans. He was looking at my chart and said, " When was your surgery?"

Answer, "June last year."

Doctor, "And you're on the shots?"

Me, "I'm on the LAR." ( The shot that lasts a month.)

Doctor, "These just look like random numbers."

Turns out the surgeon was looking at a list of my Chromagranin A values from the last 15 months. He was looking at the big picture. My numbers have gone up and back down three times in 15 months. Evidently, they are supposed to settle down somewhere.

The oncologist and I were fat, dumb, and happy because my CgA values had come tumbling down from 93 to 48 to 22 in the last three months. I was actually in the normal range and thought God had granted me a reprieve for at least a few months. Evidently, the surgeon isn't fooled by a couple of good numbers. He expected the numbers to stay in a narrow range.

I pointed out that the last number was 22--a totally normal number. He wasn't impressed. He told the PAC to have my blood tested that day. If the CgA wasn't low, I had to have an EUS done.

EUS means the gastro guys will look in my small intestine again to see if there's a new tumor there. I last had that done in October 2008 and March 2009. I get tired of going in and having the doctors find nothing. I feel they are looking at me like, "Why are you here again?"

My surgeon wants to find the tumor(s). My oncologist says it doesn't matter where they are, the medication still treats them. My tumors are about 1 mm, and they didn't show up in the scans again August 5th and 6th. There is nothing visible in my liver, so the doctor wants to go back to the intestine where the previous tumors were and see if there is a new tumor. If I didn't have a tumor, my Chromogranin A would stay low all the time.

So I wait. I'll call tomorrow to see if I can at least get a nurse to read me the numbers.

School started this week. After school I feel like I hurt from my head to my calves. Lots of muscles ache. It took me until Wednesday to even stop at the dry cleaners for 5 minutes and leave some ironing. The other days I just went straight home. Tonight I'm feeling pretty good. K and I took Spunky for a walk.

Love,
Sharon

Update 8/7/09

I had all my medical work done this week. I had scans done from head to knee in nuclear medicine.

Then the radiologist did a neck thru butt spect of my body. That is the area where carcinoid tumors are more likely to show. A spect goes around you and creates a 3-D picture. The radiologists are doing fewer spects of my body--I guess they see how much my insurance is willing to pay and have toned things down. This time there was 1 spect done 24 hours after i was injected with radioactive Octreotide; usually one is done at 4 hours, also. Plus, the technician did a 300 degree view, instead of 360 degrees. I suppose that is enough to show the doctor what he needs to know. Usually nothing shows up in the spects to show them where my cancer is: the tumors are too small.

I also had my monthly blood drawn: cbc with differential, complete metabolic panel, gastrin, and Chromogranin A. The last two are markers for my cancer. The CgA has been going down, but the gastrin is going up.

Lastly, I got my month-long shot of Octreotide or Sandostatin. So I don't have to give myself shots every 8 hours.

Pray for me because i require so much sleep now. I thought it was just my late-night hours, but last night i slept from midnight to 7 am and was sleepy again at 10:30am. I stayed awake until 1:30pm and slept until 5 pm. I can't do that and work.

When my blood is checked, my random sugar is at 96 or 97. The blood test is usually a few hours after a meal and the number is normal. I don't think the sleepiness is diabetes or hypoglycemia. Two months ago my Doctor checked my insulin level and it was normal. Carcinoid tumors can give off insulin, glucagon, gastrin and other chemicals. The tumors are endocrine tissue.

In a week I will let you know what the doctors say.

Love,
Sharon

Why "Live Like You were Dying" Doesn't Work

When I first heard the song by Tim McGraw about a man who found out he was dying and decided to do everything he wanted in his remaining months on Earth, I thought it was a nice song.

However, I could see one real problem: (1.) Living like you were dying would be really expensive. The man went sky diving, etc., etc. Doing all the fun things you ever wanted to do and visiting all the places you wanted to see could cost thousands of dollars. What if you didn't die soon? You would have to pay all the bills! It works out OK if you have a large life insurance policy, but you have to croak within a couple months. What if the doctors are able to extend your life?

Upon further reflection, I found another flaw in the theory. (2.) It's based on the belief that you have to see all this good stuff on Earth because it's the best stuff you're ever going to see. Wrong! Heaven has much better stuff. So there's no pressure to run around and see everything. I used to feel regret when I would see the title "Five Places to See Before You Die" on AOL, knowing I would never get to those exotic locales. Now it doesn't bother me. I know I will see much more splendid things. The only thing that bothers me is that evidently there will be no ocean in heaven. Will there be a large lake?

After running around doing things this summer because I might be ill next year, I can also tell you that living like you were dying is (3.) exhausting. If I go to the beach one day, I sleep 4 hours the next afternoon. Last night I slept from 1:00 or 2:00 am until 6:00 am; this afternoon I slept from 12 noon until 5 pm. I have to stop staying up late! My body thinks I'm supposed to have 2 sleeps: one at night and one during the day. Of course, in the song the "dying" man doesn't have those problems. He just goes everywhere he wants.

But then again, I did get to see David Crowder*Band in Monterey last Thursday. They were at the northern Spirit West Coast, not the one in Del Mar. So we went to Monterey for the first time in years and had a great time. The maid at the hotel probably wondered about us. We never left the room until after 1:00 pm. I didn't even get out of bed until 11:00, but we saw some good shows.