The Beginning of the End

5 02 2014

Stand up and Praise The Lord! I am sitting in the chair as Round 4 of Chemo begins, but Dr. Midathada confirmed when we met that this is to be my LAST round!!!! Now, I know that I have been quote off-line for a while. I suppose it is just the business of getting back to ‘real life’ that I haven’t found or made the time to write … in addition, there hasn’t been much to really write about as nothing has changed and nothing major has occurred.

I have continued to be blessed by the outpouring of love from friends and family both near and far. I am so thankful to everyone who has sent cards, e-mails, meals and care packages. I know I am behind on sending out thank you cards … but please know how thankful I am, and that I pray for each of you.

As usual, I am a week past the date that I began to write this. Between getting back from NAMM and getting back to work, I let myself get overwhelmed and then tune out by watching hours and hours of television programming on Netflix and Hulu. I have had time to reflect, and I have gotten so used to this present life that I am not sure how to think about going forward. I am still bald, so it feels weird to think that cancer is not part of my identity. I guess … even though this is great news -physically speaking- it is causing more of an emotional reaction than I had expected.

There are so many things that have been on my mind lately, but I have to sort them through before I can write them out.

To be continued …





It’s about time …

19 12 2013

I know it has been a while since I have posted anything. Have you missed me? There has been a lot going on, so I have been a bit busy and a bit avoiding. For starters, I went back to working full-time at the beginning of December. That was much better for me than I would have ever imagined. Shortly after going back, though, I lost my hair. It didn’t fall out in a big clump from one spot like I thought it would … it just gradually came out more and more until finally, on Friday, December 6, I had fist-fulls coming out while washing my hair. Then, I had to clean out my brush twice while getting ready for work. All day I knew … we would shave my head that night. Luckily, my taste buds had bounced back and I was able to enjoy a glass of wine – ok … a couple glasses of wine – before David and I went into the bathroom and he pulled out the clippers. I didn’t cry. It wasn’t that kind of traumatic. It was just weird. After a week of feeling normal again, here it was … another reminder that this is not yet finished.

Embracing the bald ...

Embracing the bald …

I worked again the following week, except for Wednesday when I had Round 2 of chemo. Thursday and Friday went well, and I was back at work, but Saturday things went south quickly. I am thankful for our recently purchased bed and the fact that we spent a little extra for the adjustable frame. Yes, we felt like old people buying our “Craftmatic” (it’s not, it’s a Serta), but it has been a true blessing in this situation so I don’t have to fight with pillows or stay stuck flat on my back when the only place I want to be is bed.

The after-effects of Round 2 were quite different from Round 1 – some better and some worse. I have not battled the nausea or indigestion of last time, but I have had fatigue and body aches like I have never experienced before. When the pain meds don’t take away the pain, and I have exhausted every possible comfort position, the only thing to bring relief is a redden-your-skin-hot bath. I wished I could live in one the last two days.

As bad as the last few days have been, as soon as I walk into the Oncology Center – like I did this morning – I am reminded of how truly fortunate I am, even in this trial. I am n0t trying to shrink a tumor or stop a cancer that is metastasizing like a runaway train. My prognosis is absolutely positive. I had to remind Izzy of this the Sunday after I became bald. It was really hard for her to come to terms with me losing my hair. I think it is because, for the first time since this all began, I looked different … sick, even. It was the first really physical manifestation of this trial. I had to remind her, as I remind myself, that my surgery removed all of the cancer from my body. It is not the cancer that is causing the sickness now, but the treatment … and the purpose of the treatment is just to make certain that the cancer – the real problem – never comes back. I count myself among the lucky. I count myself blessed.





Back to the Salt Mines

3 12 2013

There is something to be said for a warm blanket right out of the dryer … or the warmer as it comes to me today. It’s 8:30 AM, my port has been accessed, and I am waiting for the nurse to come over and start the Herceptin. Next week is chemo, and I am not looking forward to it. Yesterday, however,  was my first day back to work. It was a long day, but I made it through. Physically, it was not as tiring as I worried it would be, and emotionally it was actually uplifting. It made me realize how much I thrive on social interraction even though my inclination over the last 4 weeks has been to close myself off from others. I was too much in my head; I listened to and believed the lies that the enemy was whispering in my ear.

Lie #1 – that I just needed to be alone, that it would be better if I withdraw from others because they would just drain me of what little energy I had. Lie #2 – that I was too tired to do anything with meaning and that all I could really do was lay around and do things that didn’t require me to use my mind. Lie #3 – that things were getting back to ‘normal’ and no one cared anymore about what was going on.

The truth is that the more I withdrew and sut myself off from others, the more I became emotionally unstable, and the more likely I was to explode on my family.

It’s hard not to withdraw when you feel like no one around you knows what you are going through. It’s easy to believe the lie that their lack of understanding equates to a lack of caring. When you believe that, it’s even easier to cut yourself off from those who do care about you and genuinely want to help you and love on you in any way they can … in any way that you will LET them … but you have to let them. If you believe the lie that no one understands, that no one cares, it is easy to become cynical and jaded. It is easy to feel self-righteous in your anger and disdain for those around you and to fool yourself into believing that you are alone.

You are not alone. I am not alone. Sometimes that is hard to remember; it is hard to feel the presence of God, especially when I’m allowing myself to be deceived. I do not know why, but it seems to be so much easier to give in to the anger by believing the lie than to hold on to the truth that no matter where I am or what I am going through, God is with me. When I remember and believe that truth, it gives me strength; it gives me hope. My God is my strength and my hope. I pray that He would be yours as well.





Side effects

28 11 2013
It has been a week since I received my first round of chemo and a week since I last wrote anything. I am overwhelmed and speechless at the same time. There is so much that I want to say and yet I cannot find the words. 

I started this post yesterday after my herceptin infusion, and could not go on … for no other reason than I am not feeling motivated. There is plenty I can write from the last 8-9 days. Most of it you would not want to read. It has not been pleasant. I guess the first thing … what I have been thinking about most … is just how surreal this all still is for me.

Chemo? I sat in a chair playing games, blogging and watching bad tv for 5 hours last week while medical professionals were infusing my body with poison that is intended to kill any cancer cells that remain in my body before they can find a home, be fruitful & multiply. The problem with this is that the poison cannot discern between cancer cells and other “fast growing” cells, so my insides are under an attack that the doctor and I have approved. I didn’t even feel it going in. I just sat there … curled up in a recliner like it was nothing.

Now … it’s almost 8:30 PM on Thanksgiving evening. Today has been the best day since chemo so far. Having heard so many things from so many people, I was really expecting to have a couple of really bad days following the treatment and then get back to normal. What I have experienced, however, is a different unpleasant side effect each day. Some linger longer than others, but it has been a solid week of headaches, bone pain, indigestion, stomach troubles of multiple kinds and fatigue. I cannot believe the amount of different medicines I am taking -both prescription and non- just to deal with the side effects.

As much as this really does suck, I cannot help but remain thankful for my health. I have been to the oncology center twice now, and I am the youngest by at least 20 years. I see these other patients whose bodies are already frail, who are enduring the treatment in order to try and shrink tumors they still carry or to try and stop metastatic cancers from spreading or continuing to spread. As cancer goes, I really am blessed to have a “best case” rather than a worst case scenario. I think often of my high school friend Kathy who lost her battle with cancer just three years ago. When I reach my low points, I remember her faith and the way she suffered well despite a terminal diagnosis.

So what’s next? I am scheduled to go back to work on Monday. That scares me. I am worried that I won’t remember what to do … I am still self-conscious about how I look since my “new boobs” are still not in their final resting place. I have one more herceptin infusion before the second round of chemo. Based on what I have been told, I expect my hair to start falling out in about 10-15 days. Not really ready for that one. Izzy told me she has some anxiety about it too … we spent Wednesday morning having a professional wig fitting, and she mentioned that at lunch. This round of wigs, however, were MUCH better than the first. So, I am feeling much better about the prospect of going bald. They were so nice/fun, in fact, that I may stick with wigs from here on out! Enjoy the pics from this trip … as much as you can with Izzy’s shaky photography. ;o)

Wig #1 in dark brown, auburn and blond.
Style 1 - dark brownimageimageimage
Wig #2 – I like this one but not sure what color. 
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Wig #3 – Really like this one too, for the color … thinking maybe #2 in this color.
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Wig #4 Tried on this one for the cut/style but David loves it … better than the other blond one, but still not ‘me’.
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Wig #5 – eh
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Wig #6 – really just for fun … TOO long. 
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Which one(s) do you like?





Chemo Round 1 and Wig Bank Fun

19 11 2013
This is the view from my chemo recliner today.

This is the view from my chemo recliner today.

In preparation for today’s chemo treatment, I had to take a steroid last night with dinner. Whether it was the drug or my anxiety over the next ‘unknown’ I had a hard time falling asleep. As I lay awake, I began to draft this post in my head … I was going back to my creative writing assignment from Freshman Comp at UMSL. I was ready to describe my favorite season in sensory fashion from the warmth of the sun to the chill of the breeze and the crunch of the leaves colored like the embers of a dying fire under my feet … it was going to be beautiful. But as the picture above demonstrates, it is currently less than beautiful. The leaves are gone, and the only consolation is the beautiful clear blue sky contrasted by the tops of the deep evergreens in the distance.

That was a bit depressing, wasn’t it? NOW for the good news! This appointment began with David and me talking to Dr. Midathada. She reported that my EKG was great, and that my PET scan was ALL CLEAR! There is no longer concern that the cancer has moved or spread. Praise God!!!

And NOW for the fun … in preparation for the inevitable, losing my hair, David and I went to the American Cancer Society here in Lincoln and had some fun in their wig bank. We brought a couple home, but we also have an appointment with a professional fitter later this week to order a custom piece. So, without further ado, below are photos of those we tried on – some in seriousness, and some purely for fun. Let me know what you think!

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#1 First wig … not so much.

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#2 Another miss …

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#3 Confirmation that long hair is NOT me!

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#4 Sorry for the  sour face … this one was towards the end … and I was getting tired.

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#5 This is the frontrunner, according to facebook. I am only hesitant about the length.

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#5 Same wig, different styling. I really like the coloring. This is one we brought home.

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#6 Another popular one. I do like the color, maybe not the length, but we can get it cut!

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#6 Same wig, different styling. We brought this one home too.

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#7 I actually like this one more seeing it now than I did while we were ther

#8 David has always wanted to see me as a blond. I think he finally realizes that it just doesn't work for me. I do like the style/cut of this wig, so I may order it in a different color.

#8 David has always wanted to see me as a blond. I think he finally realizes that it just doesn’t work for me. I do like the style/cut of this wig, so I may order it in a different color

#9 David was looking for a glimpse of the future. ;o)

#9 David was looking for a glimpse of the future. ;o)





Do you want to know a secret?

16 11 2013

I have been meaning to write since Thursday, but this secondary implant has been less than pleasant. It is inhibits my mobility and has made me uncomfortable in general. In addition to that, although the drains were a pain in their own way, I am accumulating fluid in my chest which is creating a different uncomfortable tightness as the primary implants make their way down to where they will eventually live. I’ve spent a great deal of time in bed over the last few days.

My last post was of a more light-hearted nature, and I had begun to compose it on Wednesday afternoon. By the time we got home from our Gospel Community meeting, I had something more substantial to write about, but I wasn’t ready.  It has been on my mind ever since, but I have not been in the right frame of mind. It is another truth I have been avoiding. However, it is a truth that I had not even known myself until that evening.

Despite my current struggles, I have been blessed these last several weeks to see my husband begin to grow and change in his walk with The Lord. It has not been without its struggles, as he has tried to pull me along with him; the tables have turned, so to speak, as he has been acting as my Holy Spirit (something that I am guilty of doing to him in the past). It is certainly no secret that through this trial, I have made a conscious effort to accept it and suffer well. Still, until we were discussing Sunday’s passage in our gospel community, and Ruth so wisely commented that sometimes the purpose of a trial is to refine us in the fire, to extract the impurities and draw us closer to God. Until I heard that, I neither realized nor understood why I was so hostile to David’s suggestions that I spend my time praying, reading and studying the Word rather than playing games on my iPad and watching bad television.

It was in that moment … my immediate thought … I don’t want to be refined. I was holding on to my impurities with a death grip. As soon as that thought ran through my mind I realized why. I am mad at God. Outwardly, I have been trying so hard to be brave, strong and positive. I could not even let myself realize that I was angry with God. What kind of Christian gets mad at God? I think the answer is a ‘real’ one. I can sit here in my cancer bubble and melt down internally while pretending for everyone that I am some kind of perfect person on this amazing walk with The Lord who has all the right answers and does all the right things [Pharisee anyone?], or I can be honest and real. I can admit to all of you that I struggle because -despite the strength and depth of my faith- I am still a sinner. Being clothed in Jesus’ righteousness doesn’t make me perfect, it just makes me saved. It means that when God looks at me, He sees Jesus, and not the sinner that I struggle not to be.

When we are angry with our parents, do we love them any less? When our children are angry with us, do we turn them away? How much greater is God’s love for us …

As I continue to struggle with this, my greatest request right now is that you pray for me in this. Pray for my attitude towards this trial, towards my family and towards God.

Me and my love on our wedding day.

Me and my love on our wedding day.

 





Just for Fun #1

14 11 2013

I was not thrilled with the idea of another surgery … in fact, I always have this irrational anxiety that I will remain awake for the entire procedure, knowing and/or feeling what is being done to me … or that the procedure will at least begin before the anesthesia has actually set in. This anxiety was especially heightened today, since I was completely lucid going into the operating room … no pre-op specific area like my last two surgeries (2 weeks ago for this, and 2 years ago for my oopsie on roller skates).

Fortunately, on my way out of St. E’s (and on the way to meet my David for our delicious and long-anticipated lunch), I heard My Hope is in You by Aaron Schust. “The peace that passes understanding is my song” or in my case “prayer” was just what I needed as a reminder to turn over that fear/anxiety to God as I waited to drift into the “twilight state” for the procedure to begin, and all is well. There is some pain at the port site, but nothing unbearable, and nothing a little pain medication (considerably less than the last 2 surgeries) cannot handle.

And now, I will leave you – just for fun – with a short picture essay of David’s and my journey together in this life. We have been together 10+ years. He is the love of my life, and there is no one I would rather have by my side.

1988 - Playing at Animal House with Jaded Heart
1986 – David, age 15, playing at 
Animal House (NoCo) with Jaded Heart 
 
1988 - David, age 17, playing at a club on the STL Landing
1988 – David, age 17, playing at Mississippi Nights 
on Laclede’s Landing with Dirty Trixx
 
 1988, Sarah (10) Bobby (9) and Radie (5) before school (I'm the cutie on the right)
1988, Sarah (10) Bobby (9) and Radie (5) before school 
(I’m the cutie on the right
 

1992 - Sarah (14) with Rachel (9) & MaryB (2) ... taking brother to Boy Scout Camp.

1992 – Sarah (14) with Rachel (9) & MaryB (2) …
taking brother to Boy Scout Camp
1993 - David (22) in the Air National Guard
1993 – David (22) in the
Air National Guard
 
1994 - David, age 23, with daughter, Kirsten
1994 – David, age 23, with daughter, Kirsten  
 
1995 - Sarah, age 17, Nimue in Camelot
1995 – Sarah, age 17, Nimue in Camelot
 
2003 Fall/Winter - David and Sarah are engaged. Our [first?] pic together.
2003 Fall/Winter – David and Sarah are engaged. Our [first?] pic together.
Fall 2013 ... 10 years, and a few pounds, later ;o)

Fall 2013 … 10 years, and a few pounds, later ;o)

 







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