Sunday, September 6, 2009

What My Sister Taught Me...

She wasn't my sister by birth. In fact, for the first 17 years of my life...we had never met. Once we did Dawn exhibited the shy, quiet mannerisms of her father...who would later become my father as well. When Dawn was small her mother had developed breast cancer. That cancer had spread into the bone and she later died. Subsequently, Dawn watched her aunts and cousins lose their lives to the same fate. Dawn missed her mother, but was raised by a loving dad who tried to fill the void.



I had my first child when I was just 19. Eight months later my mom would marry Dawn's father. We had become sisters, but we weren't very close. Dawn had a close circle of friends, but I was not yet one of them. We lived different lives and while I was very outgoing, Dawn still kept to herself when I was around. Then the unexpected happened. Dawn had met the love of her life. Before long she would marry him and have a child of her own....and then it happened. As mothers with young sons, it took little time before Dawn and I found our common bond. I began babysitting for her and we would take our children out for pizza, or a movie, or the zoo, the fair, or our favorite...the pumpkin patch. Then I married and moved away from home. We didn't see each other as much or speak as often, but she had become my sister and I loved her. Of course, we would still see each other for birthdays and holidays, and we even kept up our annual pumpkin patch visit. We also took our annual vacation with our entire family to Cedar Point. She and I would ride the best roller coasters together and chat about the "awesomeness" of it all. We shared many laughs together.... and tears.



We cried together when Dawn found out, in her early 30's that she had breast cancer. That day she filled us all in on a secret. She said, "I always knew this day would come, I just didn't know when. I have prepared myself for this day my entire life." Amazingly, she was showing us her strength even in those early days, when the news of her cancer was shaking the rest of us to our core. Dawn continued to show that stregnth as she had a double mastectomy, radiation and chemotherapy and eventually had her uterus removed. Her son was a miracle for she was never supposed to be able to have children, but now she knew she would never have the chance to have another child and she wanted a baby so bad. She was sad but, she gave thanks to God for her life and the son she had. (Lesson 1: Thank God for the blessings you have, because your life could always be much worse than you ever imagined.) (Lesson 2: Everyday that you wake up and see your loved ones is a miracle and a gift.)There was good news, however....the chemo and radiation had worked. The cancer was gone. Dawn went into remission. But, Dawn had another secret that I wouldn't know about for another couple of years.



After her battle with cancer, Dawn tackled each day with a renewed spirit. She, her husband and her little man went on trips to Disney World, the beach, amusement parks, concerts and anything else she could think of. She worked hard and she played hard....but, she loved even harder. Eventually, Dawn started to drop little hints regarding her secret...but, I was too naieve to catch on. One night we went to dinner with our parents and our children. I was leaving town the next morning. When it came time to say our goodbyes I gave Dawn a hug like I always do and told her that I loved her....but Dawn hung on a little longer this time, and the hug ran a little deeper. (Lesson 3: When you give a hug and you tell someone you love them, really mean it and make it last. You never know if you'll ever truly see them again.) She kept telling me that she really wanted to come up to see my new home, but I was still in the midst of painting and trying to get our home set up. I wanted her to come up when I had things more in order. (Lesson 4: Don't let vanity stand in the way of spending time with family. The cobwebs will still be around to remove tomorrow...but your loved ones may not.) Anytime we came into town she insisted we stop by to see her. No matter what time of day, she would make the time to spend with us. (Lesson 5: Make time for your loved ones, even if your not feeling well and even if you have to make sacrifices.) That year during our annual Cedar Point trip she wanted me to wait in an hour and a half line to ride our favorite coaster. However, my husband couldn't ride that year and I felt guilty leaving him behind. After several minutes in line with her and our brothers, I told her I felt horrible about it and got out of line. Unusual for her character, she begged me to stay and share this experience with her...but, I got out of line anyhow. (Lesson 6: Sometimes it's okay to live in the moment....because that moment may be all you get.) During that same trip, she talked me into going way up above the ground on the "Rip Cord" ride. So, we tied ourselves together, were anchored high above our family and on the count of 3 one of us had to pull the cord that would send us sailing straight towards the ground and flying through the air. Of course, I'm scared of heights and couldn't find the courage to pull the cord, so she did it for me. We screamed, we laughed and yes, we soared. I was sooooo glad she pulled that cord. (Lesson 7: Strength can often be drawn from your closest friends when fear binds your spirit.) When we got off the "Rip Cord" ride we had the option to purchase the video of our moment together soaring through the air. The video was $25. After a two day trip to the amusement park, a hotel stay and a 7 hour drive from and to home...as a parent of three children this seemed like an unnecessary purchase. Although she begged me to get the video...I passed. (Lesson 8: Every chance you get record your special moments with photos or a video. While we have our memories, there is no better way to capture a moment than with a picture or film of the event.)



As you may have guessed by now, it wouldn't be long before Dawn would become ill again. She was fatigued, running a fever and felt like she had asthma. She was told by her doctor that she had the Epstein-Barr virus. (The virus that causes mono.) She would soon find out that her cancer had returned and spread to her lymph nodes, her lungs, her bone and eventually her liver and her brain. When she found out that the cancer had returned she knew this time would be different. We cried together. I visited her at the hospital as much as I could and offered to wipe her forehead, give her the medication she needed...anything I could to make her better. In a matter of months she quickly deteriorated. She was in pain, weak and sad...but, she asked me all the time to call her...no matter what time. She would beg me to stay on the phone with her, as she didn't want to miss a moment. She was so sick...but, we would talk for an hour on the phone until she couldn't talk anymore. I hated being away from her, but, I knew her husband was taking very good care of her and I had children at home who needed me.



And then, I got the call. Dawn had asked for all of her family to come to her side. She was at home and wanted us all there...she knew her days were coming to an end. I rushed from NY to Ohio in what seemed an instant. In her final days, I kept vigil over her. I again, held her hand, wiped her forehead, gave her the medicine she needed and anything else I could...to bring a miracle. I thought that if I worked hard enough, prayed hard enough and gave enough of myself that she would just get better. Hospice was there. Her family was there. But, somehow I thought we could still beat this. Occasionally, Dawn would speak to us about how she had seen her mother and spoken with her. She would make jokes and make us laugh, and she would pray with us. (Lesson 9: Don't lose your faith or your sense of humor...in a crises it may be all you have to hold on to.)In a matter of a week, she eventually lost her battle and at the age of 36 my sister passed away. I felt horrible. I felt like I had failed her. But, at that moment, I learned of her secret....she always knew the cancer would come back and take her life. (Lesson 10: It's best to face life's adversities head on. Denial only keeps us from enjoying the other many blessings we have.) It also came to me in that moment, all of the lessons that she had taught me. Those I've already mentioned including the final two. (Lesson 11: No matter how hard we pray or how much work we put into avoiding our fate...Ultimately, God is in control. Continue to pray and make sound decisions, but know that in many ways our lives our in His hands.) and finally, (Lesson 12: There is life after death.)



If you've ever seen the broadway hit "Wicked", you'd know that it is a musical about the two witch sisters from the "Wizard of Oz". The good witch...and the evil witch. In this musical, the two sisters sing the song "For Good" to each other. The words to this song are as follows:



(Elphaba): I'm limited Just look at me - I'm limited

And just look at you You can do all I couldn't do, Glinda

So now it's up to you

For both of us - now it's up to you...



(Glinda): I've heard it said

That people come into our lives for a reason

Bringing something we must learn

And we are led

To those who help us most to grow

If we let them And we help them in return

Well, I don't know if I believe that's true

But I know I'm who I am today Because I knew you...



Like a comet pulled from orbit As it passes a sun

Like a stream that meets a boulder Halfway through the wood

Who can say if I've been changed for the better?

But because I knew you

I have been changed for good



(Elphaba): It well may be

That we will never meet again

In this lifetime

So let me say before we part

So much of me

Is made of what I learned from you

You'll be with me

Like a handprint on my heart

And now whatever way our stories end

I know you have re-written mine By being my friend...



Like a ship blown from its mooring

By a wind off the sea

Like a seed dropped by a skybird

In a distant wood

Who can say if I've been changed for the better?

But because I knew you



(Glinda): Because I knew you



(Both): I have been changed for good



(Elphaba): And just to clear the air

I ask forgiveness For the things I've done you blame me for



(Glinda): But then, I guess we know There's blame to share



(Both): And none of it seems to matter anymore



(Glinda): Like a comet pulled from orbit As it passes a sun

Like a stream that meets a boulder Halfway through the wood



(Elphaba): Like a ship blown from its mooring By a wind off the sea

Like a seed dropped by a bird in the wood



(Both): Who can say if I've been Changed for the better?

I do believe I have been Changed for the better



(Glinda): And because I knew you...



(Elphaba): Because I knew you...



(Both): Because I knew you...

I have been changed for good...





Of course, my sister and I aren't witches...but, in many ways we were very different. Given all she has taught me I have been changed for the better for having known her. I wanted to sing this song at her funeral, but in my sorrow didn't feel that I could do this song justice. Therefore, I relinquished....



But, you may be wondering how I know that last lesson to be true...you know, the one about life after death? Besides the promise that Jesus Christ made. And, besides the fact that Dawn mentioned speaking to her mother and grandmother who had already passed while she was on her death bed...Dawn made her presence known in the afterlife.



You see...this year my 18 year old son Josh graduated from high school. Josh was my first born and therefore, out of my three children Dawn had known him the longest. No doubt she wished that she would have lived to see the day. On the day of Josh's graduation the ceremonies were held in an outdoor arena at sunset. It was a beautiful day. Keeping in mind that my sister loved birds...there were birds sweetly singing in the arena on that day. But, what caught my breath was the song played for the ceremony. The choir sang, "For Good"....and I sobbed. My son, who was sitting amongst the graduates could not see me. But, after the ceremony he came to me and said..."Dawn was here today wasn't she?" And, I know she was.



She will be with us forever until the day comes that I can meet her again. She has left a "handprint on my heart", and now after hearing of her lessons....I hope she has left a handprint on yours.



Dawn's Life Lessons in Review:

1: Thank God for the blessings you have, because your life could always be much worse than you could possibly imagine.


2: Everyday that you wake up and see your loved ones is a miracle and a gift.


3: When you give a hug and you tell someone you love them, really mean it and make it last. You never know if you'll ever truly see them again.


4: Don't let vanity stand in the way of spending time with family. The cobwebs will still be around to remove tomorrow...but your loved ones may not.


5: Make time for your loved ones, even when your not feeling well, and even if you have to make sacrifices.


6: Sometimes it's okay to live in the moment....because that moment may be all you get.


7: Strength can often be drawn from your closest friends when fear binds your spirit.


8: Every chance you get record your special moments with photos or a video. While we have our memories, there is no better way to capture a moment than with a picture or film of the event.


9: Don't lose your faith or your sense of humor...in a crises it may be all you have to hold on to.


10: It's best to face life's adversities head on. Denial only keeps us from enjoying the other many blessings we have.


11: No matter how hard we pray or how much work we put into avoiding our fate...Ultimately, God is in control. Continue to pray and make sound decisions, but know that in many ways our lives our in His hands.


12: There is life after death.




Wednesday, September 2, 2009

Diamox....Shiamox!

Diamox is a fluid reducing medication originally created to treat Mountain Sickness, certain seizure disorders and glaucoma. As mentioned previously, there are no medications currently on the market specifically developed to treat IIH. Therefore, somewhere along the way doctors thought ...."Hmmmm, what medications are available today that reduce fluid levels in the body." To which several responded, "Diamox!"

I was first introduced to Diamox (Acetazolamide) shortly after I was diagnosed with PTC/IIH. Typically, high dosages of Diamox are reserved for those whose opening pressures are above 40. (An opening pressure, is determined when a lumbar puncture is performed. That pressure is than guaged as the cerebral spinal fluid rushes out into the vial.) My opening pressure was 28. While stil high, my pressures were not high enough to justify a starting dose of 1500 mgs. of Diamox taken in 250 mg. tablets....two in the morning, one in the afternoon, and two more before bed.

Those first days were a nightmare. I couldn't get out of bed. I was literally dying of thirst. I felt like my body was shutting down. You see, Diamox, lowers fluids which can be a good thing if you have IIH....but, this also means that your Potassium levels and Electrolytes get all screwy. In turn, you feel like you are dying. I remember crying in the shower because I had to sit down and didn't have enough energy to bring the wash cloth to my face. I was like this was for 4 weeks. I suppose had my headaches gone away, I may have felt it was all worthwhile. But, they didn't. On top of being weak, nauseous, and feeling very dry....I also had a tingling sensation in my feet and hands. (Kind of like when a body part "falls asleep") Food and drinks tasted funny. Sodas especially were out of the question. A Coke tasted like battery acid. Occasionally I would get a rash...but, overall....I was just miserable.

Because I was still having headaches my neurologist at the time decided to up my dose another 1000 mgs. per day. Once I was up to 2500 mgs. per day, I was really miserable. My headaches actually worsened. I was taking narcotics everyday to control the pain and nausea. After a week, I decided to stop all medication.

I was then connected with a specialist and eventually placed on Topamax. This medication was primarily developed to treat migraines and seizures, but, doctors again, found the drug somewhat helpful in treating PTC/IIH. Initially, my starting dose was 25 mgs., then up to 50 mgs. then up to 75. However, getting up to 75 was tough. For some reason at that level, side effects would kick in. The first time I had eye pain, the second time I had extreme vertigo and the last and final time, my hair started falling out. While I felt that this medication helped somewhat...it could not work alone.

Then I saw a specialist at OSU who suggested I take 20 mgs. of Lasix twice a day with a Potassium supplement. Lasix, like Diamox is a diuretic used to treat fluid retention in Congestive Heart Failure, Liver Dysfunction, and Kidney Disease....also used to treat High Blood Pressure. Again, although this medication was not created to treat IIH/PTC...some genious felt it was a good try. Unlike Diamox, Lasix is much milder and is typically used in combination with Diamox or Topamax to properly treat the symptoms of IIH. Once I added the Lasix and Potassium to my regimen, I began feeling a little better. However, I was still going to the ER approximately every 2 weeks or so for severe uncontrollable pain.

Therefore, my specialist recently decided that it was best for me to go back on Diamox, albeit a much smaller dose. Vertigo, losing hair and continual pain only pointed out that the Topamax wasn't the best idea for me. So a week ago I started taking 500 mgs. of Diamox at bedtime while sticking with my Lasix/Potassium regimen. Since that time, I have been in bed almost daily. Blocking out the light and taking narcotics for pain and nausea. I can't imagine that the medication is helping greatly because the "whooshing" sound in my ear has returned, indication that my pressures are high. I have neck muscle pain and low back pressure as well. The scary part about this is that my next step is shunt preparation. If there is anything worse than Diamox....it's shunt surgery.

So...just for the record....I'm considering becoming a habitual liar. Eternally taking a medication that doesn't work, only to claim that it does. Managing my daily pain with narcotics and gritting through my teeth....all in an effort to avoid the shunt. It's all about staying away from the shunt. Diamox...Shiamox....Can't live with it....Can't seem to avoid it!