Light Bulb

Ian and I watched "Despicable Me" the other day.  He loves that movie, and I love listening to him laugh.  My childrens' laughter is my favorite sound in the whole world. 

Anyway, when Gru gets a great idea, he says--in a deadpan voice--, "Light bulb." 

I just had one of those moments.

I've spent a lot of time over the last 15 months wondering why all of this garbage has been happening to me.  "Why?" is a mantra that I can't seem to put aside. 

I'm a relatively good person.  I try to do what's right, I love my family, I am kind to others (well, unless they annoy me,) so why do I keep getting "blessed" with these trials?  Some people are ill as a result of the choices they make in their lives.  They have no one to blame but themselves for what they are going through.  For me, there seems to be no logical reason why I had cancer as a child and am now dealing with all of these late-term side effects.  I often think that it's just not fair...I had no say in the matter.

This morning, as I woke up, a thought came to me:

I did choose this.

Yep...I chose all of it.  The good, the bad, the ugly.  I know that as a child of God, I had a choice and a say in what would happen to me before I came to earth.  I know that I lived with Him, and we probably discussed my life.  I like to imagine that it would have been similar to the loving talks that my dad and I have.  He probably sat me down and told me that I'd get to come to earth and have wonderful, amazing experiences, but with that would also come some pretty significant trials.  He told me that if I can make it through these trials, I'd be a stronger person for it and that I'd be able to be more compassionate and understanding of others. 

I imagine that I was so anxious to get here that I told Him I'd take whatever came my way.  He promised me that in exchange for the hard times, I'd be blessed in so many other ways...most of them I'll never even fully realize.  In exchange for not being able to have children by myself, He blessed me with two amazing birth mothers who have given me the greatest gift anyone could ever give.  In exchange for being so ill this past year, he has blessed me with a greater love for my husband than I could have ever realized.

While, I'm sure I'll still have days where I ask why this has to happen to me, I'm grateful for this "light bulb" moment.  I know that it came from Someone who loves me very much.

It's About Time!!

So, it's snowing, and when it's snowing my satellite doesn't work, so I can't watch TV.  This is probably a good thing.

You see, I've been meaning to write for a while, but for some reason I just don't do it.  Today I have no excuse...

It's been a rough week, but also a week of spiritual enlightenment and some tremendous surprise blessings.

February 1 I went to Mayo Clinic for a CT scan.  This scan would reveal just how well my new stent is doing and would (hopefully) clear me for transplant.  I had the scan, and then had an appointment with the vascular surgeon later in the day to hear the verdict. 

When I saw the surgeon, he didn't have the results, but wanted to get me the news, so he went to go and find the results himself.  When he came back to the room, he was beaming and said he had great news.  Everything looked great, and we could proceed with the transplant.  Gordon and I were so happy.

I called Michelle, and she called Mayo and told them we needed a date right away.  (Somehow, she manages to get answers when I can't...go figure.)  Within a day we had a surgery date of Friday, February 18.  That was so quick!  Last time we had to wait over a month.  We were pretty stoked, to say the least.

Soon, everyone knew and they were all thrilled and excited for me.  I kept saying that I'd be excited when the kidney is in and is working.  I just didn't want to get my hopes up too high, as I'd been let down before and it was more than a little hard.

Thursday, February 10 I went to Mayo again for my pre-surgery visits.  Everyone I met with was so excited for me and was so relieved that it would finally be done.  My nurse case manager even cried as we talked about the journey we'd been on together.  She said she knew I'd be a tough case, but that it would get done.

As I met with the transplant surgeon, he said that he'd need to check my Hepatitis B virus count one more time before surgery.  (Luckily, he was able to use the blood draw I'd had done earlier that morning.)  For some reason, this felt funny to me and I had a feeling it would mean trouble.  No one had checked my count since I'd been cleared for transplant the first time in October 2010.  (This was the first hurdle I had to overcome.) 

For some reason, somewhere along the way in my life I contracted Hepatitis B.  I can't be sure where, as I've been a "good girl" my entire life.  The one theory I have is that I got it from a blood transfusion when I had cancer in the late 1970s.  Three of my six siblings also have it, so I may have given it to them as well.  It's highly contagious and can live in outside the body for weeks. 

I saw a liver specialist when I was first worked up for a transplant at Mayo.  He said we'd need to get the viral count under control before I would be cleared for transplant.  He put me on a medication called Viread, which is an anti-viral medication.  I was on it for three months before my viral count was under control.  I was under the impression that once I was cleared, I wouldn't need to take the med anymore.  Boy, was I wrong. 

The blood test done on February 10 came back with a higher viral count than I'd ever had before.

I was on my way to what I thought was my last dialysis treatment when I got a call from my transplant nephrologist.  He gave me the bad news and I lost it.  (I feel kind of bad for sobbing in his ear, but I couldn't help it.)  I was crying so hard that I had to pull over to the side of the road until I could regain composure.  Through the next couple of phone calls--first from the liver specialist and then from my nurse case manager--I began to understand how dangerous having a transplant when the viral count was so high would be. 

Because I will be on immuno-suppression drugs after transplant, the HepB virus would have had a field day.  It would have taken over and could have potentially sent me into liver failure.  Not pleasant to think about.  The liver specialist apologized profusely, and said that somewhere we must have gotten our wires crossed.  Evidently, I'll be on this medication for the rest of my life, but this was not something I understood at the time.

I'll have a blood draw in three weeks, and then again in six weeks if the count isn't good the first time.  We have a tentative surgery date of April 13 if I have to wait the whole six weeks.  (I'm--of course--hoping for three!)

This week I've had some pretty incredible spiritual experiences.  Some were totally random...like chatting with the medical assistant at my neurologist appointment.  She didn't know me, but looking at my chart, she said she believed I was chosen to have these trials because of who I was before I came here.  Pretty remarkable.  I had lunch with my good friend Gina, who has also had a tough year.  We were able to "compare notes" and realize that we were in the same place emotionally.  I've received cards, flowers and even some cute pajamas from people that love me.  Some relatives I haven't had contact with in several years sent us a card with $500.00 in it.  How did they know we were struggling to pay rent this month? 

There have been times the past 15 months that I've wondered if my Heavenly Father knows I'm here and that I'm struggling.  There have been many, many times when I've asked Him why I have to go through this.  Haven't I been through enough?  When will it be enough?  I spoke with my dad this week, and we just both got angry at the prospect of this never ending. 

I know that the one thing that has sustained me through this trial is my faith.  I am so grateful for the knowledge I have that this WILL end.  I am grateful to know that when this life is over, I will have a perfect body.  I don't even know what if feels like to feel "normal."  How wonderful will that be! 

I am grateful for my family.  I am grateful for a sister who is so willing to give up part of her so that I can be healthy again.  I am grateful for a husband who has been with me, holding my hand every step of the way.  I am grateful for my kids who understand when I don't feel well.  I am grateful for my parents who love me and made the decision to save my life when I was too young to make it for myself.  We all had no idea at the time what life would hold for me, but I'm grateful that they gave me the chance to find out.

Becoming Who You Were Meant to Be

Life is funny.  You get dealt a certain set of cards when you are born, and the cards change throughout your life.  Some of the changes are your fault, some are just happenstance.  What you do with your hand throughout your life determines who you are.

One of my former students is going to be graduating soon from college.  I've known this student (we'll call him Nate ;oP) since he was in the sixth grade.  I was his first band director...I taught him before I took a year off to take care of Courtnie. He was a super shy kid who just wanted to play the drums.  Before I started teaching at BMHS, I would go to the football games and see him playing on the drumline his freshmen year.  It was neat to see that he was still playing and having a great time.

When I was offered the position at BMHS, I was excited to work with him again.  I was also able to learn a lot more about him.  He was raised by a single mom and never knew his dad.  His mom had addiction problems when he was a child, and I'm sure he never had any money.  His older sister is now dealing with the same addiction problems.

It would have been easy for him to use all of the above as an excuse, but he never did.  I never heard him complain about his upbringing or his difficulties.  He worked so hard to overcome everything.  He was the drumline captain his junior and senior years and set the bar for other students to try to reach.  He worked bagging groceries so he could buy a "beater" car to get around in.  He would ask to stay and practice after I'd left for the evening.  (I think he actually slept in the band room, but I'll never know for sure.)

He's been studying music education at NAU for the past four years.  He volunteers to come to BMHS to help out with the drumline and marching band as much as he is able.  He has arranged the drumline and pit music for our marching show for the past two years, and has done and amazing job.  He's composing music for different groups at NAU, and has come to appreciate and understand music in a way that is totally new. It has been so rewarding to me to see him grow into an exceptional musician and teacher.  I'm grateful that I was able to have a small part in his life.  I am 100% positive that he will be successful in whatever he decides he wants to be.

The hand of cards we're dealt don't have to determine who we will become.  We have the power to ask the "dealer" for new cards, and we can decide how we want to play the cards.  As long as we stay in the game and keep working with those cards, we'll be the ones to determine the outcome.

I'm grateful for people like Nate who have taught me this lesson so well.

Love Conquers All

I promised a happy post about Thanksgiving weekend, so here it is:

At the last minute, we decided to go to Idaho to see my parents and brother Alex.  I haven't seen my mom since she had her car accident in September, and I felt like I needed to.  The roads were TERRIBLE both there and back, but Gordon is awesome at driving in the snow and ice, so we made it there safely.

It was so good to visit for a few days with my folks.  They are great people, and  are so good to me.  It was also awesome to spend Saturday with my grandparents and a few of my brothers and sisters.  We had so much fun just hanging out.  All of the cousins played so well together...it was a blast.  I wish we could do it more often.

Friday night we took my parents and Alex out to dinner at Applebee's.  I had some pasta with alfredo sauce, and (of course) it made my stomach upset.  I was up several times during the night.  One of the times I was up I heard my dad talking in their bedroom (this was around 2 a.m.)  I couldn't make out exactly what he was saying, but it almost sounded like a prayer.  I got up again a little while later and he was still talking.  At this point, I was pretty impressed with the length of his prayer. :)

In the morning, my mom asked me if I was okay, as she heard me get up several times.  I asked her what dad was talking about in the middle of the night, and she told me that he reads to her when she wakes up in pain.  She said it helps take her mind off the pain.

I was so touched by this.  My parents have been married for 38 years and my dad still loves my mom enough to read to her and help her in the middle of the night.  This exemplified true love to me.

It's funny how sometimes it takes a trial to realize how much you need your spouse.  Gordon has been the most incredible husband the past year.  He has cleaned up my vomit, held my hand when I was hurting, been my advocate with doctors, and has comforted me when I didn't think I could go on.  In our 19 years of marriage, I've never loved him more.

As much as this past year has been one of the worst I've had, it's also been one of many blessings.  We have been blessed in so many ways, and I am grateful to my Heavenly Father for them. 

Endurance...

It's been a week! 

Monday at dialysis, the doc told me that it was time to take the dialysis catheter out.  I had talked her into giving me a few days to see if the antibiotics would work, but my body seems to hate vancomycin.  Oh well...

It was taken out Tuesday by a surgeon I know well in Prescott.  Thankfully, he took one look at my absurd catheter that the access center in Phoenix put in and told me it would be too painful to take out while I was awake.  I had to wait a couple of hours for the OR to open up, but I was grateful to be asleep when he took it out.

Wednesday Gordon and I travelled to Mayo for a consultation with a vascular disease specialist.  He asked a ton of questions, felt for pulses at various places in my body and then sent me down for labs.  (My favorite!)  It only took two tries for the blood draw, so we had a good day!  I came home so exhausted...I fell asleep at 6:00 and didn't wake up until this morning.

Today, I got to the hospital at 9:00 for the new catheter placement.  While I was in pre-op they had to put an IV in.  I think six different nurses tried, and they finally called in the radiologist to use the ultrasound machine to find a vein.  He put in a four-inch catheter in my upper right arm.  Kind of weird.  A little while later, the anesthesiologist came in and told the nurse to give me 2 grams of Versed.  It's my new favorite drug! :)  Once it's in, you don't remember a thing!

I woke up after surgery in a lot of pain.  The surgeon put the new catheter in on my left side (the other two I've had have been placed on the right side.)  Once again, grateful for good pain meds.  They made me a little nauseous, but I managed okay.  Gordon came and picked me up and we went home.  (After stopping for a HUGE Mountain Dew.) 

Gordon got called in early for work today, and in order to get enough sleep he had to miss Ian's wrestling tournament.  We felt so bad that he wouldn't have anyone there for him.  It's the first time that he's been on his own.  Maybe he should do it more often...he took 2nd place!  I'm so proud of him!  He's getting better each year and I just love watching him wrestle.

Dialysis tomorrow...we'll see how this new catheter behaves!  Hopefully it will be the last one until the transplant in February!!
 

Done...again

I was all set to write a happy blog about the great Thanksgiving weekend I had with my wonderful family.  Perhaps I'll write two blogs today-one happy and one not so much.

So, last Monday I was done with dialysis and they took my temperature, as they always do.  They stuck the thing in my ear and it registered 99.0.  I guess you add a degree when you take the temp in the ear, so they rounded it up to 100.0.  They always freak out when my temperature goes above normal because they're worried about infections in my dialysis catheter. 

They drew blood cultures and sent them off to the lab. 

Wednesday, I was sitting in the dialysis chair, anticipating the weekend and our travels, when the lab results came back positive for bacteria in my bloodstream. Wonderful. I feel fine--not symptomatic at all, so I think it's all garbage, but I promise to go to the ER where ever I am if I feel sick at all.  I then figure that we can do the mega-antibiotics on Monday (today) when I come back to dialysis.  It's happened before.

I'm resting peacefully in my warm bed this morning when I get a call from the dialysis nurse telling me that my nephrologist wants me to get a new catheter put in this week.  She said the bacteria was MRSA...something they didn't tell me before.  Again...wonderful.

I'm just plain out of tears.  I don't have any more room left to be happy.  I can't understand why this keeps happening to me.  I've tried so hard to be happy and maintian a positive attitude, but I just don't understand.  I want so badly to "get" why I keep going through trials-one after another-that just don't seem to end. 

My brain tells me that there's something more to this.  Something more that I (or someone else) is supposed to get out of these problems.  I know that life's not supposed to be fair, and that things happen for a reason.  My brain tells me that I have so much to live for and so many blessings, and that I should just be grateful for those.  It also tells me that there are SO many people in the world who are worse off than I am.

My heart and soul just want to kick and scream and yell that it's just not fair.  I want to know why. As Sally Field says in "Steel Magnolias," "I want to hit someone until they hurt like I do."

I also want to know that it's going to end.  I don't want to spend the rest of my life being poked, prodded, cut open, examined, and in pain. 

I had just gotten (relatively) over the disappointment of the kidney transplant postponement.  I had just accepted the fact that I added two more pills to my arsenal. 

When am I going to get a break?

Back in the Saddle Again

So, here I sit...at dialysis...again.  (I feel like Forrest Gump when he talks about how he met the President...again...)

It's a strange and sorted tale on why I'm back.  Whether you want to hear about it or not is up to you, but here goes:

Two weeks before my transplant was scheduled, I went to Mayo for a CT scan of my kidneys.  The docs wanted to make sure I was still cancer-free.  (I had a cancerous tumor removed from my right kidney in 2008.) 

One week before transplant was scheduled, I had a series of appointments and tests to prepare for surgery.  In one of the appointments, my nurse/coordinator mentioned that the CT scan showed that my aorta bypass that I had done last December was now blocked on the right side, and that needed to be fixed before they could transplant the kidney.  (They attach the new kidney on the right side and attach the renal artery to the aorta on the right side.)  She scheduled an appointment with a vascular surgeon, and I saw him on Thursday.  (Five days before scheduled transplant.)  He said that he could go in and put a stent in my aorta, which would increase the blood flow and make the transplant possible.  When I asked him about the bypass graft, he said, "Oh, that's no good anymore." 

I was floored.  This entire kidney ordeal began immediatley after I had the bypass surgery.  I felt like the entire last year and all of the problems I've had have been for nothing, as the end result was that nothing was improved, and we were back to square one.  This was hard news to take.

The surgeon said that he could schedule the procedure for sometime in the next couple of weeks, at which time his intern spoke up and said, "Her transplant is scheduled for Tuesday."  He looked a little stressed, but said that we could schedule it for Monday.

Okay--so at this point, I'm thinking that it's not going to be a big deal.  Stent in on Monday, transplant on Tuesday.  I can do this. 

We go in Monday morning to prepare for the procedure.  It doesn't take long...I wasn't even under heavy anesthesia for it.  I was out by early afternoon and visited with Gordon and the kids before they checked in to the hotel and went to pick up Aaron and Michelle from the airport.

Around 1:30 a.m. on Tuesday, I woke up and my right foot was completely numb.  I called the nurse, who called the doctor.  They couldn't figure out why this was happening, so they called the surgeon.  He said to get up and walk around a bit.  I took two laps around the ward, and my foot was still numb and my right leg was throbbing and hurting.  By this time, the surgeon came in (I'm sure I woke him up), took a look at my legs and feet and said that we needed to do some emergency surgery to clean out the arteries in my legs.  He said that what happened was that when they cleaned out my artery and put the stent in, it sent "trash" and clots down to my legs and feet.  You could even see black and blue marks on the bottom of my feet where the "trash" had settled.  He also said this surgery would mean we'd need to postpone the transplant.

I'm hurting pretty bad by this point...the morphine and percoset they gave me isn't even touching the pain.  I call Gordon to tell him the news, and then get wheeled down to the OR around 3:30. 

I'm so upset at this point that tears roll down my cheeks.  I try hard not to think of the question, "WHY??" but that's all that keeps coming to me.  I'm so frustrated.  I feel bad for Michelle, who was anticipating this (and anticipating it being over!)  I feel bad for my friends and family who have prayed so hard for me.  I feel bad for my kids because I know that they want their mom back.  I feel bad for Gordon, who has been there with me every step of the way.

I come out of surgery sore, but feeling better.  I see Michelle and Aaron before they leave to fly home.  Michelle and I look at each other and start to cry a bit.  Aaron grabs my hand and says, "Michelle is here for you whenever you need her."  That meant so much to me.  Later that day, Gordon's mom and sister come to see me.  Gordon's mom took my hand and told me how courageous I was.  I felt kind of wimpy, and that buoyed me up.

Gordon took Ian and Courtnie home Tuesday night so that they could go to school the rest of the week.  I called to say good night as they were on their way home.  When Ian and I spoke, he said, "Mom, I know that everything happens for a reason."  His faith hit me so hard, and helped me to stop feeling sorry for myself.  He's right, and I know it.  That boy never ceases to amaze me--such a strong faith and testimony of obedience for such a young man.

I was blessed with amazing nurses for my entire stay.  They kept me smiling and happy.  Gordon came each day and we held hands and watched movies.  I'm so grateful for him.  He's truly my best friend.

While in the hospital, I had three blood draws a day, as they were testing my blood for the coumadin level and to see how fast it clots.  I think I counted thirty tiny scabs where a needle was inserted for either an IV or a blood draw.  I LOVE that I have wonderful veins! :^p  By Friday, all of my levels were good and I was able to go home. 

So nice to be home.  I'm anxious to do all I can to help my postponed transplant happen sooner rather than later.  As soon as my blood levels level out, we can start discussing scheduling the tranplant.  The docs said one to three months, but I'm pushing for the shorter time.  I see the vascular surgeon on Dec. 3 and see a vascular disease specialist on Dec 8.  Hopeful for answers.

Again, I'm reminded that they ONLY thing we have complete control over in our lives is our attitude.