Monday, October 17, 2011



: a weight that balances another
: a force or influence that offsets or checks an opposing force 
This is a word that often echoes in my head, the story of my life.   Honestly, I wasn't even sure that it was a real word at first, but it echoed in my head so much that I had to check.  

For those of you that are not on my Facebook, or haven't kept up on the blog that I keep for my daughter, I try to stay non-judgmental.  I am a reborn Christian (in other words, I have a personal relationship with Christ, and I try to lead by example- not by criticism or badgering).  I have friends that are pagan, friends that are Wiccan, friends in the Metaphysical church.  I'm pretty happy if people have something to believe in.  While I'd love everyone to share my views, that would make the world an awfully boring place, wouldn't it?  I try to help others in any way that I can, and I try hard to do the right things.  Yes, sometimes I still find myself swearing or saying things that I shouldn't have, but I'm not God or Jesus Christ; therefore, I'm not perfect  :) 

This week has shown my family an overabundance of blessings.  In summarizing the past 18 months, you will see what I mean.  

May 2010-  My husband loses his job of 13 years.  I partially blame myself.  I prayed for it to happen.  I prayed for change for years, but it didn't happen.  He hated it there!  So, I changed my prayers to "God, I know it may be very hard, but please change his job situation for the better any way that You can to make it better.  I realize that we may have a very hard road ahead, but I trust you."
October 2010- My daughter is diagnosed with 2 diseases in addition to her Juvenile Arthritis.  She is hospitalized for 6 days.  Praise God, for Kevin is able to be home with her.

November 2010- Emily has almost doubled her weight from steroid swelling.  The grief that we felt watching her self-esteem going out the window, watching her feel so uncomfortable, and struggling from diseases is enough to kill us.  The steroids also change how we hug and cuddle her, and how her hair smells and feels.
November also found me at my Endocrinologist, discussing my husband's problems during my appointment.  She ordered a body scan, a sodium-free diet for many weeks, and after everything else, radiation.

December 2010-  Emily doesn't even want anything for Christmas.  She's so depressed that she can't find any joy, until we are blessed with a secret Santa that left 2 huge boxes at our doorstep.  They contained food, gift cards, and toys and clothes.  The whole family had gifts left.  It was so sweet, so beautiful!  We also found out that Emily qualified for Make A Wish.
January 2011 brought Kevin preparing for his body scan by going off of the medicines that he needs to control body temperature, brain function, hormone regulation, and a slew of other things.  This was when he started to really feel the discomfort of being off of his meds again.  

March 2011- Make A Wish came out to discuss Emily's wish.  We had to change our first appointment time with them because we were given the wrong information about Kevin's radiation.  The whole "yes, you can stay in the comfort of your own home as long as you have your own bathroom" was quickly changed to "you need to be in isolation, no less than six feet away from anyone".  We panicked and it was hard, but the time flew by.  He was exhausted, but he isn't showing any signs of cancer!  (Praise the Lord!)
May 2011- We had an AMAZING trip to Disney World and Give Kids the World Village!  Emily's wish trip was pure magic.  She met Rapunzel, and even though she wasn't feeling great, she had the best week!  We also realized that we were so used to living frugally, about half of the money that MAW gave us for the wish trip was still sitting in our account.  We wanted to use it for something fun for the kids since that's why we had it.

July 2011-  We had the opportunity to go to Washington D.C. for the Juvenile Arthritis Conference!  We had a scholarship, and we decided that would be how we would use the rest of the Make A Wish money.  We had an amazing time at the conference!  We met so many people, many of whom I had "met" first on Facebook!  We spent a day on the town, had 2 hotel snafu's, and on the way home we went camping in the Great Smoky Mountains.  I so appreciated the camping and driving around Cades Cove.  I finally felt relaxed!  I think that it was around this time that I started seeing rainbows everywhere.  Yes, real ones.

August 2011- While my father is out of town, my mother finally feels poorly enough to consider going to the doctor.  Knowing that she wouldn't go unless she were dying, I suggested a trip to the Emergency Room since it's like one-stop shopping.  That trip finally revealed what we pretty much knew anyway.  I had told her she had cancer, though I thought it was liver cancer.  No, it turned out to be a baseball sized mass in her color.  It had broken through the colon wall and attached to the stomach lining.  Mom was severely dehydrated and malnourished going in, but she survived that, her colon didn't explode like they were afraid it would, she survived the surgery, and defied the odds once again by not having any cancer in her lymph nodes or liver!  

September brought us to more doctor appointments for my mother.  This is about the time that I realized that my parents weren't quite understanding what was happening in those appointments.  Very frustrating for me.
Emily had an IV port surgically placed this month.  It makes me very angry that she needs something like this, but it will improve her quality of life and our anxiety levels.  The week of her surgery my son came home from school with a large gift card from WalMart.  We used it for groceries.  (Thank you!)
And days before the port surgery my son tells me that his jaw is clicking.  Much of the month was spent trying to figure out how to get him checked out since, by this point, our finances were dwindling quickly.  The fear is that it may possibly be the start of Psoriatic Arthritis, an autoimmune arthritis that affects people with psoriasis.  I'm hoping that my baby boy doesn't take after his big sister with this!  
September also brought Kevin to his doctor.  He told her what to prescribe for him this time, and since she listened, he's feeling pretty good!  He's finally feeling more like himself now.
October brought a family weekend trip to Camp Boggy Creek.  By this point, we again desperately needed something GOOD!!!  We were afraid that we'd have to cancel because we didn't know that we would have enough money for gas, but we had to try. I'm so glad that we went!  We shouldn't have, but it was a weekend filled with big meals, and a doorway to help for my son.  We were by this point down to canned and boxed foods.  We had enough, but our choices at home were very limited.  We weren't starving, though!  While at camp, I asked a rheumatologist to check my son.    She thinks that he may have a little arthritis in his finger, but even if not, they could see him for his psoriasis.  This led me on another mission to get labwork handled and appointments made.  His psoriasis is so bad right now that I can't wait for him to be seen!!!  Also, Emily started to have more severe stomach issues.  When my boy sees the rheumy, my daughter will be seeing the gastro doctor.

Days after getting home from camp our cable/ internet/ home phone were shut off.  We had never, ever had anything shut off before like this.  We could see no time in sight that we would have it back up, and I realized that the cell phones were next.  We decided that we needed to cash in his 401K.  It doesn't have much in it, but it should be enough to cover some bills.  Also at this time, Kevin had an interview that seemed promising.  After two interviews, they called to offer him the job!  That wouldn't have been possible without another gift from God.  He sent us a miracle.  While we were cool with not having the internet, while I knew without a doubt that everything would work out because He is with me and guiding us, He had an angel pay our cable and our cell phone bills for us.  I have no idea who it was, or why they did it, but I know that this had to be divine intervention.  I also saw 3 rainbows and a bunch of butterflies this week.  I am so, so thankful.  We all are. My family is amazing, my children are very good and very well behaved, our house is filled with love and laughter, and we all feel blessed by this huge act of kindness.  We are already planning how we can use this to help other people.  Once we're back on our feet we'll have to pay it forward.  
Every time something bad happens, something good follows.  You may not choose to see it, but it's there.  It's a counterbalance.  If life were all good, we'd be very spoiled and not very nice.  If life were all bad, we'd be cranky and not very helpful.  But instead, God made our lives a little bumpy.  For those of us who stand leaning against Him for support, I think our step is lighter.  The burdens aren't as heavy on our feet, or our hearts.  For those that don't believe in anything... I am in awe.  How do they do it?  How can they stand on their own?  How can they find peace, comfort and happiness?  I have found all of that in my rock, my strength, Jesus Christ.  I don't worry much.  I let it go to Him.  I am free!  I really think that we're on the road to getting back to normal.  The time was right for Kevin to be home before, but I felt the change, and I know that now is his time to get back to himself.  His new job seems like it may be perfect.  And I am marveling at watching how God has us working in little ways in each other's lives.  How cool is that?  I know that we are loved, we are protected, we are cared for.  So blessed.  <3  Please, open your eyes to the things around you.  A buttercup or butterfly can bring such joy, but you have to choose to notice it first.

Thursday, September 1, 2011

Can anyone spare a clone?

On the way home last night, I stopped by my parents house to check in. I am now feeling like I need to go supervise at my mom's appointments.  As far as her medical condition, she's doing extremely well!!!  She's still tiring very easily but fatigue aside, she's almost back to normal.  I tell you, she's made of steel!  Except for her ears...  I think they're all wax.

As soon as I got off the phone with my dad about my mom's oncology appointment, I blogged about it.  I took notes while speaking to him, and blogged away.  Last night, I walked in the door to mom saying, "Well, I've decided that I don't want to listen to the doctor's if there's only a 1 in 5 chance".  Woah, stop.  The doctor's had excitedly given her a 70% chance for the preferred radiation treatment, and a 1 in 5 for the chemo.  At first they wouldn't listen;  I finally got some logic into their heads.  (The simple math alone!  How can 1 in 5 equal 70%???)  I will stand by any logical decision she chooses to make, as long as it is informed and well-thought out.  If it's made because she can't hear or she forgets the options... well, let's just say that doesn't fly with me.  I had asked him to record the appointment with his cell phone so he could refer back to it, but he forgot.  The worst part is that they weren't very concerned.  I had originally anticipated a problem, but I really thought that we were out of the woods.  I have decided to take the day of her next oncologist appointment off so that I can go with her.  It doesn't matter as much now because she went to her new primary care doctor today, & she doesn't want her to make any decision until she gets the reports back from the oncologist.  She wants to sit down with them and explain everything, and make sure they understand.  Thank God that my dad has been seeing her for years.  She'd be in big trouble without him, I think.

My dad had requested copies of the files from the hospital, so I started looking through the 45 pages.  It's amazing how many things they repeat several times.  In one place, they make reference to her "absent uterus".  Ok, to me that means "not filled" or "empty".  Apparently, in the grand logic of my dad it means "missing".  Mmmm hmmm.  Yeah, missing.  I finally had to point out that, since she has no medical history, no surgeries except for a tonsilectomy as a child and eye surgery, wouldn't someone have been a little suspicious if her uterus was missing?  Really?  I'm pretty sure that would bring up some questions, but he's arguing with me!  That's what he does; I cannot possibly be right.  Then, he tells me how upset he is reading this because "according to the paperwork, she knew for at least 8 months that there was a problem and she hid it from us!"  I laughed at him and pointed out that I told him in March that she had cancer.  He says "I forgot you said that."  Can you say liar?  I pointed out that he argued with me then.  He told me that I was "being dramatic, she just needs to eat at Sweet Tomatoes more".    Yeah.  Let me say that I have enough drama in my life from everyone else.  I don't need drama, I don't like drama, and frankly, I don't have time for it.  Just the facts, ma'am.  However, when I see a problem, I want to jump on it before I run out of time or forget about it.  When it comes to medical stuff, I realize that taking care of things before it spirals out of control is a good thing.  Grrr!!!  They really need to start listening to me.  They always said that I can't handle stress, until the past few years.  I have triple the stress that they've ever had with all that we're going through in my house.  I can handle it better than anyone I know!  I explained that I've learned how to have a clinical approach to medical issues.  I can handle it way better than my dad can. 

Oh, and the tumor?  The report shed some light on the size.  "CAT scan of the abdomen and pelvis showed a large tumor, 9x8x6- cm obstructing tumor in the distal transverse colon in the left abdomen at the level of the iliac crest, with the right colon measuring 10cm in width".  That makes much more sense than 65mm.  I'm really starting to believe that I need to babysit them more when it comes to decisions.  It really makes me sad.

Tuesday, August 30, 2011

Fast update on The Mom

I knew that my mom had an appointment today.  I didn't realize that they would end up getting the dates switched around, and to their benefit!

My father brought my mom to the surgeon today only to find out that their appointment was for tomorrow.  They took her anyway, and my dad came away with some of her records  :)  I can't wait to look through them.  I had asked to see her CT scan, but no one had time to show me in the hospital.  According to her records, the tumor was 65mm's.  That converts to 2.55905 inches.  (My dad told me it was 24".  Little different...)  The doctor did saw that it was the size of a baseball, and when he had shown me in the hospital he made it look like the size of a potatoe.   It is still considered stage 2, which the oncologist told them today.  She is scheduled to go in for a PET scan on Sept. 12.  After the scan she will go back and they will determine a more definite course of action, but for now it looks like they may only want to do radiation to the abdominal wall.  They say that generally chemo isn't successful (or necessary) for her type of cancer, and radiation alone will likely give her a 70% chance of survival for a ten year stretch.  Given that she will be 72 in October, I'd say that's pretty darn good.  She may be bird thin but my dad is working on getting her well nourished again, and she does seem to be holding up VERY well.  Also, the surgeon took her staples out today!  She was so excited to be able to sit on the floor again- and be able to get back up!  This means no more nightly bandage changes.  That alone is a huge relief to them both.  And she said that the scar looks great.  She sounds so good every night when I talk to her.  It's such a change from the woman who didn't place much value to her own life.

I remembered one thing that I forgot to post the other night.  She's never been able to sleep well, and she almost never remembers her dreams.  She's had two dreams that stick in her head.  The first she told me about last week, and I loved it.  She said that she was in a store, and someone was pinching her butt.  She eventually realized that it was a little boy.  She was very annoyed, and she started to yell at him.  A priest came out of nowhere and told her that she wasn't being very nice.  Her answer?  "I was told yesterday that I have cancer, and now everything is different."  To me, that was a very emotional, raw moment.  Like the confrontation of death while living as told in a dream.  To me, it was also a moment for hope and happiness, because I believe that it means that she's ready to fight.  Honestly, this is a HUGE relief.  I truly thought that we would have to fight her every step of the way to get treatment.  I thought that it may be too late by the time she decided she was ready.  That's why I was so thrilled that she allowed me to take her to the ER that night.  She wasn't gone yet! 

If you want to be inspired, if you want to learn how to be a great person, take lessons from the people around you; choose to be in the company of great people.  I am blessed enough to have many of those types of people in my life.  Between my family, my husband's family, (you know who you are!) some of my coworkers, and my friends, I am very blessed to have great company, and people that inspire me.  My mommy is one.

Sunday, August 28, 2011

Hanging in :)

I'm hopeful that I can actually create a coherent entry that isn't missing half of what I wanted to write!!!

I'd like to backtrack a few days to when my mom was still in the hospital.  My father was still in Connecticut, and the neighbors expected him to be out of town, and my mom alone.  Now, the night that I took her to the E.R., I was focused on getting her there before she could change her mind.  I watched her lock her door, but apparently she unlocked it.  Speeding ahead a bit, my sister, my older daughter & I went to their house to check up, bring in the mail & find my aunt's phone number.  We get in the house and realize there are newspapers on the couch.  They are dated from that day!!!  I started to worry that someone had broken in.  There were weird little things that stood out.  My daughter went to go ask the neighbors if they knew anything, but no one was home.  I started trying to get a hold of my dad.  I must have called his phone 30 times, texted him 3 times, left him two voice mails.  No answer, no return call.  Finally I called my mom in the hospital to see if she had given her key to a neighbor.  I walked outside while talking to mom, and another neighbor comes walking up to me saying, "Your parents scared us to death!"  It turns out, since my mom is "like clockwork" and has her flag out and papers in by 7:30 A.M., the neighbors tried the door, found it unlocked, got scared, and called the police.  It was the police that brought the papers in.  Talk about tension!!!

Mom is doing very well.  I think she's kicking herself for not getting this taken care of months ago, but since living in the past isn't very productive, we're trying to help her to move ahead.  We've had many blessings come out of this.  For one thing, it brought my sister home for a few days around her grueling work schedule.  We all love seeing her.  My oldest & I cry every time she leaves.  We just don't have nearly enough time together anymore.  This also brought my mom together with her sister; they often talk on the phone, but never get to actually visit in person.  Thanks to my wonderful cousin, we've had a couple of little family reunions, with another couple in the planning stages.  I have to say that of all of the relatives on my side of the family, my mom's sister has always been my favorite.  I loved her husband, also.  I used to spend a lot of time over there, until things got too crazy here to be able to really go visit.  And now we at least know that there is, indeed, a problem, but it's being addressed.  I knew she was sick; it's very frustrating when you know you're right but no one will believe you.  At least in a situation like this.  Well, my sister believed me, but it's harder to argue with them being a few states away.

I was told the day before Mom's release that all of the pathology was back.  A day or two later they told my sister that it was not.  We're still operating on the assumption that it's Stage 2.  My cousin has battled stage 2 cancer.  I feel as though God put her back in our path to quietly strengthen my mom.  My mom is already practically invincible.  I cannot even believe how high her pain tolerance is.  Mine is high but hers is amazing!!!  I'm very proud of how she is handling all of this.  As my husband said, she's very stoic.  Very well put!  She hasn't really acted depressed or sad at all, but given that she's going along now with seeing a PCP, an oncologist & a gastro, I know she's up to fighting.  When she pointed out that she should have listened to me before, I explained how I saw things.  She was so dehydrated the night that I took her to the ER that she really shouldn't have been still with us.  She was shutting down.  Her voice was weakening, she doesn't remember 2 days.  Her colon should have ruptured already, so they said.  And, if living through those 2 situations wasn't enough, she survived the surgery and went from having what they declared a stage 4 cancer to a stage 2.  Obviously, she's meant to be here for a reason.  My dad is taking wonderful care of her, which honestly surprises me.  He's so used to being cared for that we wondered how he would do.  Now that he's home he's really doing well.  I told him that he had better not lecture her, and he hasn't!  I'm so glad.  She doesn't need that.

She has her appointments lined up, thanks to my dad.  (The great news is that she is willing!!!)  Towards the end of the month she has a 3 day period that is all about doctor visits.  My dad is shoveling as much food into her as he can.  :)  She is already starting to look better, less like she's deflating.  She had started to get that really sunken look for a while there.  We'd like to get her fattened up for chemo. 

One thing that I don't understand is why they took her port out?  She had one in her neck.  Maybe it was just a temporary, but I don't understand why they would do a temp when a port is like a staple for cancer patients?  I'm glad she had it; if for no other reason, it helped my daughter to be less fearful of her upcoming port implant.  I just thought it was weird.  I realize that this is all in God's hands.  I keep praying, knowing that I'm not ready to lose my Mommy yet, but also just wanting what is best for her.  Right now, I'm hopeful that she can beat this.  Her attitude is great, she's already getting out of the house to go to her restaurants and shopping.  But I know how hard chemo can be.  I don't want her to suffer, but I'm hoping that she'll have the will to keep fighting.  If you asked me 3 weeks ago if she would, I'd have said no.  Right now, I believe she will beat this. 

Sunday, August 21, 2011

NOT a Stage 4!

While there is soooo much that I want to write right now, like how cute my mom and her sister were together today, or about her awesome neighbors that scared me to death, making me think that someone broke in, I don't have the energy for that tonight. 

What I really wanted to shout out was that, now that the pathology reports are all back, the cancer DID NOT spread into her lymph nodes or organs!  From Mayo Clinic, "Stage II. Your cancer has grown into or through the wall of the colon or rectum but hasn't spread to nearby lymph nodes."  Originally the surgeon had said that because of the obstruction it was considered stage 4.  So, that's amazing news!!!!!  Since I haven't been able to talk to the oncologist myself yet, I'm not sure if they're planning both chemo & radiation, but tonight's surgeon did say that she will have at least chemo.  I'm hoping they do at least one round of radiation since it did penetrate the abdominal wall.  Just in case.  So, really great news tonight!  By the time I got to her room today, she wasn't connected to ANYTHING.  She had lost the G-tube, the IV line, the drain in her stomach, and the massaging leg pads!  She was looking back to normal, almost.  It was a wonderful day, knowing that she's getting back to normal a little at a time.  She even tried to eat a little  :)  We don't expect her to eat a lot, but to try to eat was awesome for us.  She may be going home as early as tomorrow.  We shall see!

Saturday, August 20, 2011

Quick Update

Yesterday I missed seeing the oncologist.  My sister missed him, too.  THANK GOD she is here!!!  I'm so glad that she had time off available to fly in on such short notice.  She has been a HUGE help; just having the support is awesome, but since I had to be across the state at my daughter's hospital all day yesterday, it was wonderful to have her here.  Even now, as I'm working on getting myself out of here to head there after this update, she's texting me from the hospital to tell me that the surgical site looks great, she has 24 staples (!!!) and they're getting her up to use the restroom as I type this.  :)  And they just pulled out her drain, the last tube in her stomach!

Yesterday Mom was allowed a clear fluid diet.  This was especially wonderful since she was BEGGING EVERYONE for a 7-Up or Sprite!  They also took her G- tube out!  They had pumped an amazing amount of toxin out of there, so it was no longer needed.  She had grown used to it, but now she's much more comfortable.  She still has to wait for the scar to heal up, of course, but she's definitely doing much better.  She looked better & sounded better yesterday.  I really want to talk to the oncologist.  The nurse told my sister that she didn't overhear the oncologist say anything to mom about chemo or radiation, but I can't imagine that they wouldn't do at least one, especially since the tumor had crossed into the abdominal wall.  I don't feel comfortable with the idea of no chemo or radiation!  I do appreciate seeing a new bag of antibiotics hanging every day.  For a small hospital, they seem pretty darn good. 

The first nurse that she had for a full shift caught a medication time error.  I was so thrilled to see that they are on the ball.  They say now that she may be able to leave tomorrow.  Apparently she's now doing so well, except that she doesn't really want to eat.  But she never wants to eat, so that's not unusual.  I'm hoping that once the pull the fluid bag, her appetite will come back.  They're talking about disconnecting her.  Off I go to get into the shower, and meet my aunt & cousin at my mom's house.  We are going to drive ahead of them to the hospital.  I'm hoping for continued great news; it seems likely!  I still have a lot of worries, but I won't let them overtake us. 

Wednesday, August 17, 2011

Never Thought I'd See the Day

For all of the years that my mom said that she didn't care if she lived or died, for all of the years that she insisted we let her rot & die without ceremony, we landed at the Emergency Room last night for her.  As I wrote back in March, she told me that she knew she was sick, but then she retracted her statement.  I was busy putting two and two together; I was fairly certain she had liver cancer.  It would make sense after so many years of drinking, though she didn't drink heavily.  At least a daily whiskey sour when I was a kid, sometimes more.  In later years, a glass of wine a night.  She didn't talk to me for a week or two when I explained to her that I thought she had cancer, and she needed to be seen.  She told me she didn't care, she wasn't going to bother, and then she claimed she was fine.  I knew better.   So did my husband and my sister.  My father was quick to tell me that she just needed to eat at Sweet Tomatoes more.  Yeah, apparently he thinks I'm dramatic.  I think he's confused.

Well, I tried to push her, but she's more stubborn than I am so I was left to make subtle suggestions and hope for the best.  Finally yesterday, some five months later, she decided she was ill enough to go to a doctor.  I jumped on this.  She thought they would send her to the hospital, so I pointed out that if we went to the ER she wouldn't have to wait for an appointment.  They wouldn't send her home and then to a hospital (like she had thought).   She was severely dehydrated by this point.  She is still dehydrated a day later after several bags of IV fluids.  She couldn't keep ANYthing in her.  I am so grateful that she finally decided to go to the hospital.  She told me that she was so sure that she had cancer that she ordered a wig off of TV.  It was sitting unopened in her living room.  She knew she would need chemo, and lose her hair.  That gave me great hope.  To me, that said that she's ready to fight for the first time.  It always made me so sad that she views herself as so disposable.  We've always tried to build her up, but she's always been a hardened pessimist.  Oh, so much can change in a short time!

She decided the hospital wasn't too bad in the first few hours.  She was a little disappointed that they assigned her a male nurse; she doesn't trust male nurses, but hers was ok. Then they made her drink about 40 ounces of contrast fluid for her CT scan.  She was so happy to have a drink!  Until about ten ounces were gone and she still HAD to drink the other 30.  That's when she started to become less than amused.  The CT went well, and it wasn't too long before the doctor came in with a diagnosis.  She said, "Well, I have some bad news."  Pause.  Waiting for us, I guess.  Then, "You have colon cancer.  A big mass that's blocking the intestines.  That's what's causing all of your discomfort."  Ok.  I think they were surprised at how quiet and calm we both were, but we both knew.  She had told the doctor earlier that she had a tumor.  I had marveled over how distended her stomach was.  Standing up it didn't look it at all.  Laying down... different story.   Next came the G-tube.  Now there's a treat.  I had never seen this before.  From a clinical perspective, WOW is that cool!  When it's your mom, not so much.  She took this like a pro.  She teared up just a bit, but she was so reserved & brave!  She made me so proud.  It's amazing how much crap was hanging out in her stomach.  Obviously, at this point they had decided to keep her.  I had planned for that anyway.  At 4 A.M. we were moving upstairs.  They put me in a waiting room to get her set up, but they forgot about me.  Around 5 A.M. I got back to her.  She was very uncomfortable because of the G-tube, but determined to make the best of it.  At 5:30 I couldn't stay safely anymore.  I had to go home and try to get some sleep.  I finally crashed around 6:30 A.M.  I barely slept because I was waiting for the phone to ring.

When I got back to the hospital with my oldest daughter around 1 P.M., the surgeon had already come to see her.  He hadn't left the floor yet so they asked him to please come speak with me.  He explained that everyone has a valve in the colon that opens and closes to let fluid down.  He said most people with colon problems have that valve stuck shut so nothing goes down.  Well, mom's was working just fine, and was so full that it was getting ready to blow.  They had to operate now before it ruptured.  He couldn't tell me if anything else was affected because the tumor was about the size of a medium potatoe.  Awesome, huh?  He said that even if it hadn't reached the liver or lymph nodes (normally staging it at stage 2 or 3) because it caused such an obstruction it was considered a stage 4.  He said that he would be surprised if it hadn't spread.  Was I shocked?  No, because my mom is immune to pain.  She's spent so many years ignoring pain that she's become an expert.  Why would this be different?  She knew it was bad, but she could still ignore it.  We only had a few minutes with her before they took her downstairs.  I was able to kiss her, tell her how much we love her, and finally get out a few tears.  That's as much as I've been able to get out.  I'm so used to dealing with trauma that I just can't cry like I want to.

She made it through surgery very well.  They had said that depending on how well she did, she may go back to our normal room, or she may go to ICU.  The surgeon also said that she would likely have a colostomy bag, but it would be reversible.  He said that he would try to stitch her up without out, but no guarantees.  Seriously, this guy wins my "Docs That Rock" award.  She came out of surgery missing most of her colon, with no colostomy bag.  How did he do it?  I have no clue, but my relief was amazing!  I was sure that she would be very depressed and lose the will to fight if she had to deal with the bag.  Thank you, Dr. Brock!  He said that the reason her stomach hurt so badly was the tumor had grown into the abdominal wall.  His good work at removing the mass from the wall resulted in a hernia, but that seems like a small price to pay.  They also placed a large, 3 line port in her neck.  She couldn't figure out why she was having such a hard time speaking.  Well, that does it.  She seemed in good spirits this evening despite the pain level being, at times, "an 11 on a scale of 1-10".

I am a huge mixed bundle of emotions.  I am so grateful that she finally agreed to treatment, that she did so well, and that she seems to be going along with their plans for her future.  I am still worried about her prognosis.  We haven't really been given that yet.  I know what stage 4 generally means, but the surgeon also said that it didn't appear to have spread, though he would be surprised if it hadn't.  We will know more when the pathology report comes in.  It's refreshing to have dropped the appearance that everything is fine, what are you worried about?  It's nice to just be there with her.  She's been so darn cute.  I am really not prepared for things to get any worse than this.  She's the only one that I call.  She's been the one I turn to for many years, even when I knew I would get yelled at by her.  I wish to God that she had gone in March, but she was only going on her terms.  I can't change the past, but I can certainly help to mold her future.  With God guiding and strengthening us all, we'll get by.  She probably shouldn't have lived through the severe dehydration, but she did, and she was damn lucky that colon didn't rupture, 'cuz that likely would have killed her very quickly.  The way I see it, she's already sailed through potential death twice.  See?  Miracles do happen.  We are very blessed. 

Saturday, June 25, 2011

The Dermatologist appointment

Well, after a couple of changed appointment times, we finally went back to the dermatologist.  I don't worry as much about me.  I have Rosacea.  Honestly, until I started treatment for it, it wasn't all that bad.  It's only since I've been using prescriptions that I've had crises.  I was happy to get back to report that Differin was NOT working for me but making things worse.  Dr. K prescribed me 2 different topical antibiotics that should help reduce the inflammation.  My face is really bright red.  I look sun burnt.  I'm not.  I find it fascinating.  I don't really care what other people think, and I do use make up to feel better about it, but I don't worry so much about it like some people do.  I guess I'm just not that insecure.

My son's issues... different story there.  His psoriasis has been spreading in ways that were really freaking us out.  Right now it's taking about an hour to properly cream him, and every night we're finding new areas that are trying to erupt.  It's very frustrating.  Despite using a steroid carried by oil for his head, his head was just so bad!  We were instructed to use this twice a week with a flare; we used it two days in a row and it didn't seem to touch much of it.  I spent a very long time combing through his scalp, using a brush to gently coax the skin up, alternating with the comb.  The next day brought a snow storm of flakes.  So, I wanted to bring up Enbrel to our doctor.  I know that Enbrel is very, very expensive.  I also have 2 boxes in my fridge.  If he started at a small dose, say .4ccs, I could have enough medicine for 2 months.  That should be enough of a trial because Enbrel is like a miracle.  Or, they also use Methotrexate for psoriasis.  I'd really rather use the Enbrel because MTX can affect the liver and he would need frequent labwork, but it's worth a thought.

I expected a fight.  Instead, the doctor brought it up to me upon entering the room and seeing his head.  However, as ready for it as I thought I was, she brought up a few things that I hadn't considered.  The biggest point was that there aren't very many meds for psoriasis, and so there won't be many choices later in life if we exhaust this one early.  Also, since "kids don't get psoriasis", very little research is done on the effects of these products on children.  Granted, we have been down the Enbrel path before, but of course the arthritis that my daughter has made it easier to justify.  So, I am at a crossroads with this.  The main eczema creams (Protopic & Elidel) did nothing for him.  Halobetasol is about the only thing that works for him; the one that we have tried to switch to did NOTHING for him.  I'm tempted to try it again, but this time use Aquaphor over it.  This way, we'll be switching off of it for a while and giving his skin a break from the Halobetasol, and hopefully the Aquaphor will keep enough moisture in to help.  We tried the other one without Aquaphor before.  Since we added it to the Halobetasol it seems to work better.  I dunno.  She ended up doing steroid injections into 2 different areas.  His knee was thick, scaly, really bad and itchy.  His head... one of the many plaques up there was really bugging him.  So, she chose one area on his head and the knee.  Oh, did he sob  :(  If I didn't understand the power of steroids and know how much they could help, I wouldn't have agreed.  Poor little man didn't want to hear it.  He sobbed for quite some time.  Once he felt better we went to the beach  :)  The knee looked purple & black there.  Kind of scary!  Only a few hours later the knee looked wonderful!   While it isn't clear, it certainly looks much better than it did.

The other big DOH! with this is called Olux-E.  She gave us this to try.  Now, if I were a normal person that didn't research the heck out of everything, I'd probably have just used this stuff blissfully unaware.  Thank God, I am not a normal person.  I started looking into this tonight.  What I found on the Olux-E site was this:  "Use in pediatric patients under 12 years of age is not recommended because of the risk of HPA axis suppression.
After two weeks of twice daily treatment with Olux-E Foam, 7 of 15 patients (47%) aged 6 to 11 years of age demonstrated HPA axis suppression. The laboratory suppression was transient; in all subjects serum cortisol levels returned to normal when tested 4 weeks post treatment."  They say that with kids 12+ those symptoms occurred much less often. 

What is HPA axis?  Well, I haven't exactly figured that out yet, according to this downloadable PDF file, it can appear with or without any symptoms, and it can be fatal.  According to the Wikipedia entry, "The hypothalamic-pituitary-adrenal axis (HPA or HTPA axis), also known as the limbic-hypothalamic-pituitary-adrenal axis (LHPA axis) and, occasionally, as the hypothalamic-pituitary-adrenal-gonadotropic axis, is a complex set of direct influences and feedback interactions among the hypothalamus, the pituitary gland (a pea-shaped structure located below the hypothalamus), and the adrenal (or suprarenal) glands (small, conical organs on top of the kidneys).
The interactions among these organs constitute the HPA axis, a major part of the neuroendocrine system that controls reactions to stress and regulates many body processes, including digestion, the immune system, mood and emotions, sexuality, and energy storage and expenditure. A wide variety of species, from the most ancient organisms to humans, share components of the HPA axis[citation needed]. It is the common mechanism for interactions among glands, hormones, and parts of the midbrain that mediate the general adaptation syndrome (GAS).[citation needed]"

So, I guess that is one less medicine we will be able to use.  The side effects are absolutely terrifying.  We have enough medicine worries with the meds that my daughter has to inject to feel somewhat normal; we shouldn't have to deal with this for skin problems!  Very frustrating.  

At the moment we are choosing to not focus so much on this.  We are very excited to be going to the Juvenile Arthritis Conference!  We will be in Washington D.C. next month for about a week.  We plan on visiting several Smithsonian museums, the National Zoo, of course see the historical sites, and then on the way home we'll go camping!  I NEED a night or two in the mountains.  We found out that we can camp at the base of the mountain that I will one day call home.  I could very happily live in a cardboard box here.   My heart belongs in God's land where I feel more connected.  I feel at peace, at home with the mountains, the trees, the wind on my face.  My heart just soars seeing the sun come through the trees in the forest a certain way.  And the waterfalls?  Ahhhh... Home.  Yup, I'm a sucker for nature.  It won't be long now  :)  

Friday, March 18, 2011

My parents & I have role-reversed

My parents didn't have me until my mom was 36 and my dad was 40.  I am now almost 36.  Sometimes I feel like we all got jipped.  My parents wanted kids about ten years before they actually had me.  By the time they had me, my mom really didn't want kids anymore.  I'm not sure if it was because of the death of her mother or if something else triggered something but somewhere along the line, my mother became one of those very pessimistic people that could switch emotions faster than you can blink.  I remember my father never admitting that anything was wrong, but telling me (at age 5) that my mother can't take stress, so I need to not stress her out.  Since any little thing could stress her out, we were doomed.  I remember coming home from school on a day when she was home alone all day to find our TV remote at the bottom of the stairs in pieces, pillows & blankets thrown on the stairs, and the newspaper scattered from the bottom of the stairs to the top.  I think I was 12.  I didn't know what to do; surely she would have heard me come in.  Would she be crying or angry?  What the heck happened with no one else around?  I also don't know when she started drinking, but I don't remember a time that she wasn't a drinker.  She kept it at home; she didn't hang out at bars or drive drunk.  She stayed home and made us miserable.  She was bad enough that I knew by 7 that she needed serious help, and by 14 that she would probably die from some liver disease or another.  (She's why I don't drink.)  Somehow, despite all of this, she was one of my best friends from about age 15 on.

After my sister & I moved out, she chilled out a bit.  She started drinking less, & she did seem to become a little happier.  She still never really achieved true happiness, & never wanted to live.  No, she never really attempted suicide but she threatened us all the time when we were kids.  "One day you kids will come home and find me dead in the car or with my head stuck in the oven".  The oven one sounds so ridiculous now, but it wasn't very funny back then.  She has been amazing with my kids!  I wondered where that mom was when I was little?  However, she absolutely refuses to see a doctor.  She had no prenatal care when she was pregnant with me, and I was delivered by nurse midwife.  She saw a dermatologist once a few years ago, but that's it.  She has suffered stubbornly through all sorts of infections & lived to tell the tale without ever having to go to the hospital.  Maybe she thinks she's made of steel, invincible.  She doesn't care about herself.  This puts me in a huge bind.

For the past few months I've been trying to figure out what was going on with her. I thought she looked yellow, but maybe it was just the light?  And then she tells me on Tuesday that she's dropping weight like crazy and she's sure that something is wrong.  Then she changes the subject & won't go back.  Grrr!  It took me a few days, pondering, talking to people, reading.  Then it hit me:  she has something going on with her liver.  Maybe cirrohis of the liver from years of alcohol use, maybe liver cancer (dropping weight), maybe some other liver disease.  At first I was a little ticked at myself for not thinking of it months ago.  But, it's my mom.  Who wants to see their mom as sick?  Or think about their mom being sick?  Since we were dealing with Kevin's thyroid cancer and Emily's various conditions, I guess it makes sense that I missed it but wow.  This is huge.

True to form, my dad knows that she won't go to a doctor so he's trying to get her to eat at Sweet Tomatoes (salad bar) for every meal.  There, all better now.  I asked him if he wanted me to take him to Sweet Tomatoes next time he has a heart attack.  He says "sure, why not?"  GRRR!!!  I begged her, pleaded with her, tried to rationalize this with her tonight.  I explained my theory, what tests would likely be done, how "simple" it would be to correct if caught early enough.  She tells me no, she doesn't want to deal with it.  I was on the ball, I had an answer for everything.  I know... she's not going to change her mind based off of 2 conversations.  I got her angry enough to hang up on me.  That's fine.  I just want her to think.  I asked her what she'd do if I did this?  "That's different".  She doesn't want to prolong her life.  So, now what?

I know that I couldn't live with myself if I did nothing.  I want to keep her around another 20 years.  Is that being selfish?  Would I be selfish if I made her an appointment & took her myself without telling her?  The whole situation is just very frustrating.  My father tells me that it's because she wants to die before he does.  She's afraid that she will be poor, so she just wants to die before him.  I can't get through to her.  I'm not done trying!  I'm just at a point where they are both being completely unreasonable and it makes me crazy.   I have been praying for the right words, for guidance, maybe a little divine intervention.  I guess I'll just take it day by day.

Thursday, March 17, 2011

New blog format

I have so much happen with my little one's arthritis and related issues that I tend to focus on, but we have plenty of other newsworthy things to write about.  For me, writing is therapy.  Once I write about things it's like a release.  I think that I will now keep my other blog purely about Emily's MCTD and health issues.  This one will be for everything else. 

Monday, January 17, 2011