Monday, July 28, 2014

I'm Bent... Thanks Matchbox 20

I've been walking across songs and finding more that truly speak to me now. We all like this song or that one when it's popular on the radio and maybe even have favorites. I'm noticing today that songs that weren't top of my "playlist" at the time they were released have suddenly become ones that tell the "The Story of My Life".
If I fall along the way
Pick me up and dust me off
And if I get too tired to make it
Be my breath so I can walk

If I need some other love, then
Give me more than I can stand
And when my smile gets old and faded
Wait around I'll smile again

Shouldn't be so complicated
Just hold me and then
Oh, just hold me again

Can you help me I'm bent
I'm so scared that I'll never
Get put back together
Keep breaking me in
And this is how we will end
With you and me bent

If I couldn't sleep, could you sleep?
Could you paint me better off?
Could you sympathize with my needs?
I know you think I need a lot

I started out clean but I'm jaded
Just phoning it in
Oh, just breaking the skin

Can you help me I'm bent
I'm so scared that I'll never
Get put back together
Keep breaking me in
And this is how we will end
With you and me bent

Start bending me, it's never enough
As I feel all your pieces
Start bending me, keep bending me
Oh, until I'm completely broken in

Shouldn't be so complicated
Just touch me and then
Oh, just touch me again

Can you help me I'm bent
I'm so scared that I'll never
Get put back together
Keep breaking me in
And this is how we will end
With you and me will let them
Without understanding
Here I go there again

IT happened...

Well... it happened. You dreaded it for 3 1/2 years. Now she's gone.

And you are lost.

You are doing good at faking it. As usual. It's actually hilarious to you in a sick sort of way because nobody knows how messed up you are inside. Everybody hugs you and says you are strong and an inspiration. When all you can do is... well, Blind Melon said it best:

All I can say is that my life is pretty plain
I like watchin' the puddles gather rain
And all I can do is just pour some tea for two
and speak my point of view
But it's not sane, It's not sane

I just want some one to say to me
I'll always be there when you wake
Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made

And I don't understand why I sleep all day
And I start to complain that there's no rain
And all I can do is read a book to stay awake
And it rips my life away, but it's a great escape
All I can say is that my life is pretty plain
ya don't like my point of view
ya think I'm insane
Its not's not sane.

Friday, October 21, 2011

Life with MS

So here's what's bugging me today:
In February I started Avonex. It was rough for about a month, but when I figured out the particular "cocktail" of meds to take with my shot my symptoms started to get better. Since then, things have been going great!

Well, not really. I have felt better. More energy, better balance, better strength. But my liver has been hurting since I started Avonex. Dr. Crowe ran tests on everything but the liver and found nothing. I just stopped pressing the issue because it costs so much to go to the dr. And I have insurance!

The energy increase is probably from the caffeine that I have been taking. Yep. A No-Doz, Stay Awake, r Jet Alert. Whatever form of straight caffeine comes cheapest in the bottle. One of the tablets is equal to about two cups of coffee. So I justify it that way. Caffeine is not the enemy! It's the carbonated, chemical-laden beverage that is! Or, it could be the 6 cups of coffee a day that you are drinking. For me, the one tablet.

My migraines are almost non-existent now. Well, until this week, but I will get to that in a minute. I think, since February I have had maybe 2 big migraines. I used to have one a month at least!

So like I said, things were going well, but not perfectly. I was faking it pretty well, I think. Even fooling myself.

Dr. Bashir was well pleased with the positive progress I was making. He was distressed by the liver pain though. So he said that I couldn't take ibuprofen and tylenol as my symptom reducers with my Avonex shot. he gave me another drug. Mobic. Supposedly an NSAID like Celebrex.

Needless to say, I was very nervous. Things might not have been as perfect as I was making them out to be, but I didn't want to go back to the severe flu symptoms that I had in February either. But 3 hours before I took the shot, I took the mobic. And nothing else. Like the good little girl that I am.

I will admit that I was cold before I took the shot at 7:30pm. It was not a cool night, so this was not a normal feeling, but I got under the blanket and was fine. So it was fairly normal. About 2.5 hours after I took the shot, the symptoms started. Usually I have a major increase in the burning, sensitivity, and stinging in my skin, so I was not surprised when that started even though it was earlier than normal. But about 9:30, when Andy came to bed, I was freezing. I put two thick blankets over me, wrapped up in my thick chenille robe, put on pants, socks, and a long sleeve shirt, and then had Andy put two more lighter blankets on me. I even put on a head cover. I thought I just needed to warm up. I was trying to "positive think" myself out of what was actually happening.

Around 10:45 I gave up the ghost. I woke up chilled. Not hard chills, thank God. I got up and decided I had given it the old college try, so I gave in and took 2 ibuprofen and 2 tylenol. I was feeling feverish and chilled, so I decided to warm up in the tub. My fever was 102. After the hour long hot bath, 100 and no longer chilled. I felt like a wimp. Giving in to the drugs. But I was p'd off that my cocktail was dismantled in the first place!

So I have been flat of my back all week, basically. In bed on Monday, but on the couch the rest of the week. I have felt awful! Beyond that, I have been depressed all week. Depressed because I was sick, depressed because I am losing time that I need to be working on items for the craft fair, depressed because I went 5 days without a bath, and depressed because I may have to do this all over again next week!

You see, I called the Dr on Tuesday and told them what's up. The nurse called today and said they are changing me from Mobic to Celebrex, but to still avoid I&T, if possible. Although I am allow one tylenol, if absolutely necessary. Hmmph!

Here's the thing. In February, I suffered with the severe chills, fever, aches, and days of not feeling well. It got better. I figured out that for me, taking an alleve before the shot and then two ibuprofen and two tylenol 2 hours after the shot would alleviate all side effects of the Avonex. It was the perfect combination. Everything was going great.

Well, not really. Apparently my liver didn't like the cocktail anymore than it would have liked an alcoholic cocktail. So I will have two tylenol waiting for me by the bed when I do take the shot this time, even with the Celebrex. I'm a renegade.

Geez! So NOW the nurse calls me back and says the Celebrex is on a step therapy with my insurance. Forms have to be filled out! My insurance won't cover Celebrex (Step 2) until I have used Mobic for 30-60 days (Step 1). My nurse said that she has gotten approval before, but sometimes not too. She said the Step therapy is for arthiritis sufferers, not for MS related issues.

Whatever.  I'm getting to go back and have my cocktail of drugs. I will at least feel better next week, even if my liver won't.

This is totally a soapbox issue for me. This is a personal example I am using. The hospital charged $15.49 for nasal spray. It was basically Equate brand nasal spray that was $0.97 at Walmart. BCBS paid the hospital $3.59 for the spray based on the contract the hospital has with BCBS. Now, the person who walks in from the street without insurance must pay the full $15.49 for the spray. That uninsured individual can "settle" their account for less, but it will negatively affect the individual's credit rating! I mean think about it! In the day and age that home insurance companies are folding for having to pay out more money than they can afford for repairs, you would think that health insurance companies would be feeling the same effect! Although you have to realize that home insurance companies are paying people based on real and actual prices for goods to replace their home. Home insurance companies are not making contract deals with Ace, Lowes, and Home Depot to pay a cut rate for products! Home insurance companies don't restrict the retailers or repairmen you can use to get the products and repairs. BCBS is not the only bully in the school. All major health insurance carriers and HMOs do this. Hospitals are going broke because they have to mark up prices to cover the amount they lose from these insurance contracts, but the mark-up has reached a critical limit where people without health insurance coverage can't afford to pay to pay the difference. Where is the news expose looking at the difference in the business management of Health insurance and Home insurance? Where is the news magazine that show the public hwo health insurance companies are have increasing revenues even in this economy, while home-owner insurance companies continue to fold in areas of high claim rates?

Are you covered in soapy bubbles now? Sorry. Signing off now.

Tuesday, August 23, 2011

All in all...

Mom's CEA is down to 15! Yippee!! She's on a new med and is losing her hair this time, for real.

Things rocked along after wanting something done about that breast lump, and I forgot about it. Aunt Patty was diagnosed with Breast Cancer at the beginning of August. That got me to thinking again. Definitely larger when I felt it. I couldn't really find it in April, but now it is obviously there. So I went to Dr. Crowe, and he ordered an ultrasound. Here are the results:
  1. Radiologist said it was lymph node
  2. Angie Boyd said it was lymph node but looked large and mis-shapen. She also said that she would have a biopsy just for peace of mind.
  3. Crowe is in Africa. Always is when my family has a medical need, it seems. Mainly because my family is always having issues in August/September.
  4. Crowe's office called and repeated exactly what the radiologists report said.
  5. Uncle Terry and Aunt Marilyn, Rona, and Andy all say to have a biopsy.
  6. My insurance will not pay for a biopsy unless Crowe refers me to a surgeon. 
  7. Crowe, even though I haven't asked yet, won't refer me based on the results from the radiologist.
So why do I still want a biopsy? Because everyone else that has had a "spot" has had a biopsy! First time especially! Better safe than sorry! I seriously ignored symptoms the year before I was diagnosed with MS and refused to go to a neurologist at Crowe's suggestion. Now, I want more aggressive care, and I can't get it. My next mammogram is in October after the 26th. I'm still frustrated, and I still have that "feeling" in my gut.

My gut feeling may have had something to do with the tumor that is Andy though. It was a close call with this one. I considered surgically removing it. Decided that serious treatment was required. Things are better so far. We are trying. Both of us. It's actually an effort for both of us, but neither of us want to leave and we both love each other. Then we should work on it, and we are. Whole-heartedly!

Patty had her radical mastectomy today. I'm praying for her so much. I've seen how this looks after in photos. It has to be rough. I dont know much about her treatment plan either. They are pretty closed mouthed. I haven't called, and I am feeling guilty about it.

Paul is still not taking any treatment. He won't get a second opinion either. We are frustrated to say the least.

Rona's sister Rene was diagnosed with breast cancer two weeks ago. I haven't heard from Rona yet. I called and left a message but I know she needs space. I worry about her, and Rene.

Megan started her job at Dr. Stanfield's office. She loves it. I love that she is getting paid and can pay for her own things now. I'm freaking out about her turning 16 in a week!!! Plus it is weird that I am taking her to LBW in the morning and picking her up at work in the afternoon. I don't really see her at school. She doesn't work on Friday-Sunday. She thinks she doesn't have to do anything on the weekends. She just lays around and watches TV. But hey, I would too, if I could.

My newest love...much better than Pinterest! YouTube has great ideas, but Pinterest lets me pin my favorite ideas of EVERYTHING, including videos, from all over the web! Love it!

Sunday, June 5, 2011

The latest and greatest...

What's the latest and greatest?

  •  Mom's CEA (cancer marker blood count) is down to 20 from a high of 239!
  • Your weight is down! You have lost a total of 65 pounds in 2 years! Don't blow it now!
There are the low blows too...
The mammogram you had in April came back questionable. So you went for the second one. It was "probably benign". Yep, you didn't like that wording at the time either! You asked your doctor for a US, but the insurance wouldn't pay. So you have to wait for the 6 month anniversary of the 2nd mammo to have another compression  mammo! The pain in your left breast was awful! 2 weeks it hurt!

A cracked tooth left you with pain in the jaw for 2 weeks too!
Syd had a C in science. Which made you realize that you are NOT doing well in the supervision of school work in the evenings. And to make matters worse, it appears that Syd is a mini you. You were horrible about lying about stupid things and so is she. You wouldn't do homework or study and neither will she. The bright side is that you turned out ok. However, the scary part is that there were so many wrong turns that you took that could have ended so badly! You definitely don't want Syd making any of those bad decisions. Pray. Pray more. Then Pray even more.
Andy is still here. What does that mean? It means that after the 4 sons and a stupid incident, you still stick with him. Why? Because deep down you do love him. He makes you laugh. He is the best friend you have. He says he loves you. More importantly, the kids need him. You need him...financially and for taxi service. Does that mean you will stay with him forever? Yes, I love him. He would have to really screw up again.

Turning the corner...
Financially life still sucks. I don't know if we will ever have breathing room! I do hope so. How will we ever help the kids with school?

MS is fair. Today sucked, but you are really doing great. MAybe it is the weight loss. Maybe it is the fact that the Avonex gives you more days in the week that you feel good, that you actually can plan around, that you can now do more! No matter the reason, physically you are better. :-)

Nancy Matos is an AWESOME friend from YT. Hope she is still txtn and messaging the next time I stop by for an update...

Be you.

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!