Friday, August 27, 2010

The day my life started to end...

We all go through life growing, experiencing, working, doing... But have you ever considered that you are basically working so hard to get to the end of your life? I hadn't either. Until Monday...

I will begin my story in the spring of 2010. I can't pinpoint exactly when the feeling came to me, but I do remember waking up one morning knowing that something bad was going to happen to someone around me. I immediately felt that it was my mom. I have always had this "sense". No I am not a psychic. It is VERY underdeveloped. I can't be sure. Plus, I forget to trust it a lot. In this instance, when my mother-in-law died, I thought that was what the feeling was about. The feeling hadn't gone away though.

On Monday 8/23/10 Mama went for a check at the dr about her gallbladder. She had been diagnosed with diverticulitis three weeks ago. More on that later. Monday he ordered a ct, because her liver was enlarged and the gallbladder symptoms. The ct showed masses in the liver and a large one in the colon.

That night the dr called and told her to get to West Florida Hospital because she needed massive amounts of antibiotics. She got here and they found she was severely anemic and have given her 4 units of blood up to this point. They said the antibiotics were not for an infection but for the immune response to the cancer. I came down on Wednesday morning for her colonscopy procedure. The surgeon was unable to even attempt the colonoscopy because of mass was so large it was almost closing off the bowel. They told us it was definitely cancer Wednesday afternoon. 

She had surgery Thursday 8/26/10. Dr Patrick Dial removed the affected sigmoid colon...8 inches of it. Resected the colon and no colostomy!! The liver was inoperable. The masses were spread everywhere in the liver. Over 2/3 of the liver is affected. Because of the spread, there is no way to remove the bad without taking some good, which would leave her with nothing. He found a tumor on her right pelvic wall as well. It was wrapped around the ureter. He dissected on it, removing what he could. There is still tumor around the ureter, so we pray that the chemo will work on it. The consideration here is that the ureter could be blocked resulting in her needing a stent or kidney failure.

Her CEA was 230. It is a tumor marker. It will be the thing to watch, well other than the CT and Pet scans, to see how well the chemo is working. Dr. Dial said we should hope for a 5 in the end. I am going to have to research to learn more about it.

Dr. Boatright has Aspergers. Well, we actually don't really know, but he acts just like Tyler. He is frustrating. We ask questions differently and he doesn't repeat. You know how you hear something, especially in this particular instance, and you will restate the question asking again. He answered, "You know everything. There are no secrets." Well, I personally agree with Susan that we need a second opinion. She wants to pay for mom to go to MD Anderson for a consult.

Dr. Denby, the GI who did the colonoscopy attempt, prayed with us when he told us she had cancer. God has really given us wonderful doctors here. (I'm holding opinion on Boatright just yet.) Dr. Dial is the best in the biz, and the only dr from Tallahassee to Mobile that does the colon resection and liver resection in the same surgery. Plus, he went ahead in the same surgery and inserted the mediport in her subclavian artery that will be used for the chemo, which is usually done in a separate surgery!

The nurses are fantastic! Very nice! Helpful and caring. I am so thankful that God led us here.

I have heard enough from the drs, nurses, and Paul Dangerfiled, the anesthesiologist, here that it is possible that there were no symptoms until just recently. I am over the fact that Mom ignored needing a Colonoscopy in March. If she had it then, we will still be in the same situation. The cancer is so expansive in the liver that she has had this for over a year. Based on the amount of blood lost, she has had it over a year. I completely forgive her for not going to the dr or having the colonoscopy in March.

My hypothesis is that the original infection she had 12-13 years ago resulted in this. Damaged cells remained. There is too much coincidence in the uterus infection and the sigmoid and pelvic wall masses. It is the same proximity.

Things I have to get over:
(1)Dr. Davis not doing a proper palp exam (feeling of her abdomen) at some point. When I have not been to Dr. Crowe in a while, he always makes me get on the table for him to do a standard physical! I don't have to ask. He looks at the chart and does it. 3 weeks ago when mama had that case of "diverticulitis", according to Davis, he couldn't have done an exam. He may have, as Mama swears he did, but he couldn't have done it properly! She had hepatomegaly (enlarged liver) on Monday. It couldn't have gotten that large, which was because of tumors, that quick! In my eyes, he failed to do his job. Period. Maybe she would have had cancer anyway, but he could have at least done his job and examined her!
(2)Mamas will to live. What there is of it. Whe has good attitude and good spirits, but I wonder how much suicidal thought there is underneath it all. With this diagnosis and the prognosis of 6mo to 2 years given to her yesterday, what is the reaction she had? Well, when I told her they said that, she said, "Well, I feel fine!" Of course that is pre-surgery. What bothers me more is the "I still want to work" attitude. I want to be aggressive with the chemo. She wants to be able to work.


Thursday, August 19, 2010

I forgot!!

I almost forgot!! You have lost weight too! Based on the information at the doctor, you have lost 20 pounds since March. Its weird. I didn't think I was that heavy in March, but apparently so.

The point is that now I am BELOW the weight that I was when I was admitted to UAB!!!
In 20 more pounds, I will be what I was when Megan was born!
In 45 pounds, I will be PERFECT!

The whole process is just watching portions, making better choices at times when I can, not depriving myself of anything, and definitely NOT DIETING!! It really hasn't been that hard.

Main keys:
  1. limiting sugar makes me feel less hungry in general.
  2. eating one chip will start a craving that last for several days.
  3. Yogurt is a great "sweet" treat at ngiht.
  4. Eat what you are craving...if you dont then you will eat a ton of other things until you get the ONE you want!

Im still here

It has been a while since I posted. School has started. Megan is in 10th grade and is so excited about turning 15! I remember those days. Sydney is in 5th grade and loves school. Her history class is a lot of work. Mrs. Ennis was tough in choral, why do I think she would be any different as a history teacher. Syd is also taking Cheernastics with Juddi Jones and LOVES it.

I participated in a tag swap this week with using distressed techniques. The tag looked beautiful! I am so proud of it. I gave Mema a copy of it, plus I have some left over, so I will give Mama one too and still have one to keep!

Mema had another stroke over a week ago and is still on a walker. She is good except she doesn't have feeling in her foot. She will be getting it back, so the drs say. I sat with her yesterday.

Andy's mom died July 2nd. It was a tough time for the family. Megan took it very hard. Syd was touched too. Funny thing is there was a Bible that she had, where she had written prayers for the members of her family over the years. A lot were about Chris, which really proves prayers will be answered! She also had prayers about us not keeping MEgan from her. You know, it took her death for me to actually see just how much she loved us all. I was so offended when she threatened to get Megan, but now I can see it was desperate plea just to be able to see her. Her death affected Andy, but as usual, he is very quiet with his emotions.

He did cry, especially when we told Syndey Grace. Syd was gone out of town with Mama and Daddy somewhere. So that night when she came home, we had to tell her. I will never forget how she ran to his arms and told him she was "so sorry for his loss". I cried myself. She is such a sweet child. Of course, Megan is too. She has continued to try to talk to Andy about his feelings on the subject. It frustrates her that Andy is so closed off.

The plaque for the burial plot is done now. We need to get some flowers for it.

Her death also opened the door for me to talk with Mama and Daddy about their wishes. Daddy was very frank and said that cremation would be fine with him. Mama agreed, sort of. Of course, I made it perfectly clear that I want my body donated for research. Andy won't talk about it. The girls don't want open caskets, which wouldn't have happened anyway!

That brings up a point about funerals and caskets. I don't look. As a rule. I prefer to see the person in my memories as he or she was in life. Not the plastic made up model. So what I do is avoid the casket "viewing" area. With Gloria, however, I had no choice given the situation at the time. I am actually glad that I looked. the last time I saw her was on the Tuesday at lunch before she went to the hospital that night, then died on Friday. She looked so much better in the casket. Almost normal again. It had been a couple of years since she has looked that good! That was once that I am glad I looked.

Andy is still concerned about taking Zocor since her death. The drs said it was the diabetes, zocor, and recent heart surgery that caused her congestive heart failure. When Zocor was mentioned, Andy and Gary both focused on it. Andy goes to Dr Crowe tomorrow to talk to him about it, his stomach probs, and hopefully his turning red-ish-purple in times of "stress". Hopefully I will be back to update about all taht.

I have a UTI and yeast infection. That explains the time on the computer today. I feel like crap with all the meds and the sickness.

It's like Andy said the other day... "If we had more money, life would be perfect"!!

Wednesday, May 19, 2010

Another Day Another Nickel

You LOVE The Big Bang Theory! Andy is watching it right now, and you hear him laughing. It reminds you of the fun and laughs you had together when you were dating.

On to business.

Grandmother Ona had her surgery for parathyroid removal today. It went well. She is the most HATEFUL person on the face of the earth! She told Megan that she had GAINED WEIGHT! Of all people....Megan!!! With as much as we are going through with her! She struggles with self image on a good day!

Take it easy on yourself. Focus on calorie reduction and healthy eating!

Tuesday, May 18, 2010

Day 1

Today you realized two things: 
  • the heat is what is making you feel so fatigued (it is not depression)
  • your desire to create is being impeded by the chaos in your craft room.
You need to remember:
  • When the temperature outside begins to be 90 degrees or more, you will start to feel so bad that you will either think you are having a flare up because you are "coming down with something" or that you are in a depression. You are NOT.
  • When the weather does begin to get hotter, and you are starting to notice the effects, take measures to combat it: 
    • Wear your cooling vest when outside.
    • Stay in A/C as much as possible.
    • Take a break more often to drink a cold drink.
    • Remind yourself that even though you don't feel as well and can't do as much, you are still doing fine!
  • You put your bulletin boards that you made by painting on ceiling tiles in Southern Style today. Savanna loved them! Be very proud of yourself. You have talent, even if you don't want to admit it.
  • You sold two dance canvases that you made by stapling tulle at the bottom of pink tinted canvases and adding ribbon straps hanging on a hanger. You sold these two canvases the week of the Andalusia Ballet recital. This was good because there were only three days that people had to shop for your canvases. You should expect to sell many more for the Opp recital. Savanna loves these too! 
To Do:
  1. URGENT: Make Style Tags for Bulletin Boards at Savannas
  2. Make 8x10 dance canvases
  3. URGENT: Clean craft room
  4. Check Clearance Rack for SU
  5. Organize craft room boxes--see previous post for today
  6. Cook supper tomorrow
  7. Get paperwork ready to go to bank for loan
Tumbling tonight. She wrote Justin Beiber a fan letter. She is so cute. She told him he "rocks like crazy"!
She has so much homework right now because finals are coming. She has to turn in her shadowing program application tomorrow.
The top closet rod fell off the wall today on his side of the closet! Hilarious!! But tons of work. The girls and I thought it was a prowler, and I went to investigate with a small fork in hand!! There has been trouble at work with attitude, but that has been all resolved. Basically, Andy was patted on the back and commended for having a good attitude for the company. It will pay off in the long run.

Feng Shui in a Craft Room

You watched one of Marion's videos (apieceofcraftdotcom on YouTube), and it was one of her and her husband. Garrett was saying that having disorganization, even if it is enclosed in a box or basket, causes your feng shui(sp?) to be off, which causes your creativity and inspiration to be blocked. Believe it!

While you were sick recently, when you would get something or go in to make a card real quick, you would leave the mess out because you didn't feel like cleaning up. Also, before you got sick you had been doing a huge creation of stock for the store of my items, and that left the new Tim Holtz stuff, your Big Shot stuff (which is still not organized to your satisfaction), all the stamps and things you used for the happy bday cards for Mama, and the paints and things that you had been using all out too! So the area is a mess that needs to be cleaned up, and there is a lot of new things that need a home. TH stuff is now in a box, but it is not organized, but where to put it. The chipboard box, which has cut chipboard pieces from packaging, coasters, etc. in it is in such chaos, it is hard to be motivated to do a mini---that you are dying to do--because you will have to deal with that stuff in that box! Oh, and you have a new (old) bookshelf that needs painting--it is bumblebee yellow leftover from the old elementary school, which you bought from the neighbor for $20-- and you need to get all my children's bookmaking things on that shelf too.

So after watching the video, you know for a fact that you are sort of avoiding the area because of the chaos within, even though when it is cleaned up there is no visible chaos. The new bookshelf will help a LOT. But there is a huge need to take some of those "chaos in a box" boxes and organize them more neatly. It will really help your "aura".
LOL--- No, you are not some new age hippie or anything, but what Garrett (Marion's husband from the video) said really made sense!! Her room is so neat/oragnized, and you love that she has a small sofa and table for sitting and reading, etc. You would probably spend a ton of time in your room if you had a seating area...
Maybe your next plan should be to rearrange and add that red comfy chair!


This blog is written to myself.

The reason I am taking this approach to blogging is because I have memory problems brought upon by the MS (Multiple Sclerosis). I considered how much my memory had been affected in the past 4.5 years and decided that I needed to do some things to prevent the loss. Well, actually I have always been very active in working to keep my memories and to build my memory-retention-ability. Another reason I am addressing this blog to me is to provide myself a place to make note of memories and things I need to remember.

Mnay people with cognitive problems and diseases that affect memories are encouraged to keep a journal. It occurred to me that I have never been good at keeping a journal, so journaling won't be a good outlet for me. But blogging, which basically a journal that the world can access, is the perfect set up. I get on the computer every evening, so I can take a few minutes to blog about my day, memories that randomly pop into my mind from the past, or other things that are important to note.

If you are visiting this blog, you are hereby invited into the ramblings and wanderings of a progressively dissolving mind. Unlike Alzheimer's, Multiple Sclerosis has treatments to prevent the rapid decline of mental acuity. However, in noting where I was 5 years ago--in graduate school at the top of my class in all aspects and teaching topics I would thoroughly research and retain-- I have decided that if the descent that I appear to be traveling on continues at the same decline rate, another 5 years will show even more memory-retention-ability loss.

So without further ado...     And so are the Days of Our Lives...