Stage 4 - No More
Stage 4…who knew?! It’s one of those
questions you never really want to know the answer to, so I never asked…and my
doctors never said. Until now. People always want to know. So, I finally asked. Not that it matters. It’s irrelevant now. But it’s still a shock to the system to hear.
How would knowing that at the beginning
have affected my psyche? Would I have been
more frightened or felt completely helpless?
I don’t know. I hope not. I hope that my faith and resulting strength would
have been no different given that information. But how would my family have reacted? I don’t know. But I’m guessing not well. So, now that I have this information what do
I do? First I thank God that my doctors
never mentioned this little ditty to me.
Psalm 68:19 Praise be to the Lord, to God our Savior, who
daily bears our burdens. I
knew from the get-go that I didn’t want to delve too deeply into my diagnosis. I didn’t want to Google it…no WebMD for me (Dad,
stop Googling!). I knew all I needed to
know. My cancer is extremely rare, and
it was huge.
Wednesday, May 21, 2014
What a year it's been. I've come full circle. Happy Anniversary to me. As I write these words, I don’t think it’s possible to express the emotion I feel as I encounter for the first time the anniversary of the discovery of my tumor and subsequent cancer diagnosis. I don’t think you can hear the sarcasm…it’s not a ‘happy’ anniversary. And as I write that, I don’t think you can hear the confusion I’m feeling, because it actually is ‘happy’. I’M HERE to write about it. I’m feeling so many things that are hard to put into words, but I’ll give it a try! It is a combination of reflection on the past year and grief. It’s hard to recognize that the past year ever even occurred: the ups and downs; the trials and tribulations; the tests that strengthened my faith. But it did. With that reflection comes grief as well. I feel like I’m mourning a part of me that is lost forever. I’m mourning a part of my life and my children’s lives that we will never be able to get back. But with that, I realize (and I hope my family does as well) that the Holy Spirit filled that empty space completely. This was the journey I was supposed to take, not just for me, but for those around me as well. And maybe one day my children will understand the reason they had to experience it…and maybe they won’t. But it’s part of God’s perfect plan for their lives too.
The past year I feel like I have been so strong…I had to be. That strength was real. It was necessary. And let there be no doubt about where that came from. God made me strong. If I didn’t lean on the Lord for strength, I never could have made it through this with the tenacity and positivity that kept me going day after day. But now, looking back and being on the flip side, I realize that the Lord is giving me permission to be weak. I think I need that. I think I’ve earned that. I can grieve what has happened to me and my family.I was weak and dropped to my knee when I was diagnosed. I was strong and determined during treatment. And now I feel weak (or maybe it’s just more lament) once more. Everything comes full circle.
It’s interesting how God can speak so clearly to you when you’re heart is opened and ready to accept it. Ephesians 1:18-19 I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which He has called you, the riches of His glorious inheritance in the saints, and His incomparable great power for us who believe. I don’t believe in coincidences anymore. Coincidence is nothing more than God pointing out to you that He is with you and involved in every little detail of your life. God has a hand in all of it, as you’ll see from my anniversary timeline that follows.
April 18th, 2013 Mom’s 70th birthday & painful attack that finally led me to neurologistApril 18th, 2014 Mom’s 71st birthday: I’ll start off with saying right off the bat that the fact that this first anniversary (my Mom’s birthday too) falls on Good Friday is certainly not a coincidence as some might believe. I know that God planned it this way. The day started off with Molly and I bringing special donuts to ‘Nana’ (as my girls lovingly refer to her). Later that day Molly and I went to see “Heaven is For Real”, which we had read together a few years ago. It seemed fitting somehow on this day to see it. I love seeing how much Molly loves the Lord already, and to help her nurture that is so special, even if it’s just by watching a movie together. Later that night we had a birthday dinner celebration. I never mentioned the anniversary of the attack and neither did anyone else. There is no question that it was a big elephant in the room though. I chose on that day, to celebrate the ‘Good’ on Good Friday. The fact is that on this day thousands of years ago Jesus died on the cross for me (and you!) so that we would have eternal life…Heaven is most certainly for real. On this same day a year ago a part of me died too, but thanks to Jesus I’ve been given a rebirth. 2 Peter 3:13 But according to his promise we are waiting for new heavens and a new earth in which righteousness dwell. That, my friends, is something to celebrate. My mother’s 71st birthday was something to celebrate. Yes, this was a ‘Good Friday’ and I would leave it at that.
April 19th, 2014: There is no doubt the toll this journey has taken on my kids. As I tucked Molly into bed this eve, I noticed the look in her eyes before the tears even came. It’s amazing how a mother instinctively knows when her child is in pain. I remember my mother used to be able to see it in my eyes too, but I would tell her everything was fine and nothing was wrong. Then I would go write. Writing has always been my outlet and release when I was suffering. Anyways, I asked her what was wrong, and just like I used to do, she said she was fine and nothing was wrong. But I know her and didn’t want her to go to bed upset, so I didn’t let it go. Upon further questioning (sounds like an interrogation, doesn’t it?) she finally said, “I just love you so much! I don’t know what I would ever do without you!” BAM…my heart just broke in two. With tears now billowing from her usually bright blue eyes and streaming down her china doll cheeks, the weakness I had felt over the last several days was gone. God made me strong once again…for Molly, not for me. I had to be her rock. I asked her if she was worried about the cancer and my upcoming tests. I told her that she didn’t need to worry. I told her that God willing I was going to continue healing and we would not have to go back. I made sure to say “God willing” to make sure she understood that if anything did happen again, that would too be part of God’s plan for me. Psalm 139:16 All the days ordained for me were written in your book before one of them came to be. But I assured her as well as I could. It made me so sad to see her so distraught, but it also filled me up beyond measure to see that kind of Agape love. John 13:34-35 “A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another. By this all people will know that you are my disciples, if you have love for one another.”
April 25th, 2013 – The date of the MRI that showed a tumor the size of a large plumApril 25th, 2014: Today, after years of talking about a ‘Girls’ trip to Vegas, we finally boarded a plane and headed out to Las Vegas. We (myself and 9 other fabulous women!) booked this trip without much planning. Our friend Kellie had a timeshare that we were going to use, and it was one of those ‘book it now or lose it’ deals. So, without realizing the significance of this day, our trip was booked. I later made the connection and thought it was pretty ironic that the same day I was heading to Vegas for a celebration, was the same day they found the tumor the year before. But I knew that this was no coincidence. Just like with my Mom’s birthday and Good Friday, God provided me with something good to wipe away the memory of the bad (even if only temporarily). But God’s hand was so intricately placed in my every detail. I realized that when I got my MRI results and that devastating news the year before, Will had been in Las Vegas. He flew home from Vegas to be with me on April 25th, 2013. I flew to Vegas to have fun on April 25th, 2014. We had each made one leg of a round trip journey. We had come full circle. I was headed in the opposite direction. Last year as Will headed eastward back home, my life was quickly headed south. But this year as I headed West toward the bright lights of ‘Sin City’(see below J) our lives are now steadily headed up in the right direction, with the brightest light of Jesus Christ leading the way. ( Romans 8:1-2 Therefore, there is no condemnation for those who are in Christ Jesus, because through Christ Jesus the law of the Spirit of life set me free from the law of sin and death.)
April 29th, 2014: I don’t usually go to the mall at 8:00pm, but Meghan needed some new Nike shorts for athletic training and Spring football which started bright and early the next morning. We made our way down Main Street (it sounds so Norman Rockwell, doesn’t it?) towards the sporting goods store. I would tell you which one, but the name just ruins the whole Rockwell thing. Anyways, as we drove down Main Street I noticed the American Cancer Society logo on a freestanding sign at the corner of God’s Superhighway and Coincidence Lane. It was ever so small, but for some reason (God, duh) I saw it as I passed. I asked Meghan if she saw what the sign said, but she didn’t, her phone captivating her attention as she posed for a Snap Chat selfie. My attention prodded, I had to know what the sign said, so after a quick look in my rearview mirror, I backed up to see the sign. First of all, when has traffic been nonexistent on Main Street? Anyways, I saw the American Cancer Society ‘Relay for Life’ logo with the date of their upcoming event…May 2nd…three days away! I had never heard about the event locally and was completely unaware they even did one in Lake Travis until that point. I instantly knew that God had taken me there that night to read that sign (God even uses Nike shorts J). I knew that God had cleared the street so I could back up to read it. And I knew that it was no coincidence that the day of the Relay was exactly one year from the date of my diagnosis. Full circle. God provided me with something good yet once again, to wipe away the memory of the bad. I immediately went on the ACS website and contacted their representative in charge of the race. I pulled a team together and began fundraising. My focus had become the positive. Now I had the opportunity to fight cancer in a completely different way. Romans 8:28 And we know that in all things God works for the good of those who love Him, who have been called according to his purpose.
May 2nd, 2013 - date of diagnosis with extremely rare Adenoid Cystic Carcinoma.May 2nd, 2014: The day had arrived. Relay day this year…D-Day last year. One year ago I remember getting the call. I answered the phone in my room and made my way to the hallway, where I would hear those three little words…You have cancer. I remember just surrendering to the shock and fear, dropping into Will’s arms and sobbing uncontrollably. James 4:10 Humble yourselves before the Lord and He will lift you up. After the shock, I surrendered that day to the Lord. But today I had come full circle once again. With the help and support of my friends and family (special shout out to my brother Sean, the Rosko’s, Ginsbergs, McBurney’s, and Severances) who participated with me at the event and to those too numerous to name who contributed to the cause, I am so grateful. It made me realize once again the amazing community of people God has surrounded me with. In less than 72 hours, I had managed to raise more money than anyone else in the event, and our team came in second for overall fundraising. For those of you that know me well, you certainly know that I am a competitor. Once the donations started coming in I was obsessed with watching the meter rise and crushing my fundraising goal. It’s always fun to win…especially when the prize is helping other people!
We walked that night from 6pm until nearly midnight, with each lap symbolizing one more step in the right direction, and one more trip around the sun meaning another birthday for someone suffering from this horrible disease. The relay allowed each of us to walk and rest as needed, each sharing in the burden of the journey. Each part responsible. 1 Corinthians 12: 25 so that there should be no division in the body, but that its parts should have equal concern for each other. As I went through treatment, it was a different sort of relay. Each treatment was another lap, and each friend, doctor and family member was a participant in raising my spiritual and emotional funds. That relay continues for me as I live life one step at a time, one scan at a time, one lap at a time, one birthday at a time. For me, there have been days where I needed to rely on my ‘team’ to keep me going. They were my parts. There have been laps that I couldn’t walk, even when I had to, and I know that God carried me during those times. I am a survivor.
There was a survivor lap which kicked off the Relay, and my dear friend Torri and I walked together, united in our pain, united in our growth, united in our faith and united in our desire to help others who have suffered with cancer. Molly walked alongside me, and we held the banner which proudly boasted “Survivor”. That is a label I am happy to own. There was live music and I was honored that Meghan’s dear friend Hannah sang a song and dedicated it to me. It was a beautiful tribute from a beautiful girl who we adore. Hannah, Meghan and Katie all walked with us too. It was so nice to have the support of three 15 year old girls who probably had other things they could have done that night…but they chose to be with me and to help with the cause. Katie's grandfather had just been diagnosed with cancer too, so it was a cause close to her too. God is working in their lives too. There were also games, including Tug of War. I thought this fitting given the fact that life with cancer is just like it…you pull and you tug and you fight with all your strength. Sometimes cancer fights back and when you have just a little slack in the line it tries to pull you down. But given God’s strength in you, the Holy Spirit, it is possible to pull hard enough so that you win and leave cancer beaten and in the dirt. That is what I plan on doing. But I need to stay strong in the word. Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (God is my steroid!)
The most emotional part of the evening was the Luminaria Ceremony. People purchased luminarias and decorated them in honor of someone who is a survivor or in memory of someone lost to cancer. As I put together the list of people I wanted to make bags for, I suddenly realized the prevalence of cancer in my family and among my friends. It was a little overwhelming when the list kept growing. Anyways, people were asked to stand behind a bag and pull out the glow sticks. One group at a time, they were lit. Survivors were asked to light them first. I was brought to tears as I lit mine recognizing its significance. Then it was family members who lost someone to cancer and family members affected by cancer. I watched as I saw my husband and my kids light theirs and I was brought to more tears. Then it was friends of cancer survivors or victims. And I watched my friends who loved me through it all light theirs too. One by one everyone was holding a light which we placed in the bags creating a beautiful landscape lit with the light of hope and remembrance, fueled by the light of Christ. Romans 15:13 May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. I couldn’t help but be moved by the father and his two young sons that were beside us, who lost their wife and mother to cancer. I just pray for them and thank God that my husband and children will hopefully never have to stand beside a luminaria bag without me and feel the loss that I saw in that man’s eyes. That is why I am going to get much more involved next year…more to come on that amazing story!
Life has come full circle for me. There is no such thing as coincidence. Most importantly, God has shown me with precise clarity that good will always overcome the bad. Period.
Tuesday, April 1, 2014
The old adage of “See no evil, hear no evil, speak no evil” refers to the idea of ignoring the things around you and pretending that you never saw, heard or spoke of it. Imagine the little monkey emoticons with their hands covering their eyes and ears and mouth. I wish that life was that simple…that you could just pretend things away. But ignoring the truth doesn’t change it. I have seen the effects of treatment, and heard a cancer diagnosis or have not been able to speak properly. This is my reality. For me, it isn’t about a theoretical blind eye, or deaf ear or closed mouth. It is about the trials and tribulations of the possibility of a real blind eye, an actual deaf ear, and a mouth that has trouble speaking. But because of this, I now choose not to see the evil but the good in people. I choose to never stop speaking the truth of our Savior, Jesus Christ. And I will not listen to the evil one, but will open my ears to hearing God's Word. Romans 10:17 “So faith comes from hearing , and hearing through the word of Christ.”
Wouldn’t it be nice if we could put on rose colored glasses and peer into a place where we couldn’t see hurt or anger or violence? Then imagine not being able to see anything at all. I can’t imagine living in a world of complete darkness. But there are people who are physically blind and can’t see their child or read the Bible or gaze at God’s amazing creation. Then there are others who are spiritually blind and don’t see the truth that is so blatantly surrounding them. Luckily for me, I’ve come to know and accept the truth, and proudly proclaim it. I can see it without a doubt. Hebrews 11:1 “Now faith is being sure of what we hope for and certain of what we do not see.” My cancer diagnosis and treatment, along with the roller coaster ride that is now my life, has made God’s presence in my life even more visibly evident. When I was told early on in my treatment that I would absolutely lose the sight in my right eye, I am guessing I reacted a little differently than most. And I may have already told you this, but I think it bears repeating. I didn’t cry. I didn’t freak out. I think I just said “OK.” I’m not sure why I reacted that way. Actually, I am…it was the calm given to me by the Holy Spirit. I suppose I knew that it didn’t matter if I could see out of my right eye. I felt like if anything, it would help me to see things even more clearly…to see the bigger pictures and set my sights on Christ and not the things of this world. Romans 12:2 “Do not be conformed to the patterns of this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.” I have had people all over the world praying for me, and I’m here to tell you that prayer works. The absolute certainty of my doctor that I would lose my sight has been mitigated by the prayers of a powerful people. I have perfect vision in both of my eyes! There is some damage to the optic nerve, so there is a chance that things could change. But for now we just praise Him. I must admit that I have aged over the last year apparently (and not just the new wrinkles). I hate to say that I now find myself holding the phone farther away from my face or increasing the text size so I can see it better. I used to tease my dear friend Gina by holding the menu across the table or holding her phone outstretched (all in fun, by the way). But now it’s my turn. Doctors tell me it’s now time to bite the bullet and get some reading glasses. Store bought readers or prescription? Prayer works. Miracles happen. See no evil…but see the truth.
Did you ever play that telephone game with two soup cans and a string? I imagine putting it up to my right ear and listening as my friend’s voice permeates the string (or so it’s supposed to go) and we chatted like we were on the telephone. For those younger people reading this blog, there was a time when there were no cell phones…when even talking on the regular phone (attached to a coil, attached to a wall) to friends was a privilege because you had to pay per call. And forget about calling your friends long distance! Anyways, I digress. The thought of putting that can up to my ear, without the string attached, and without the sound of my friend’s voice, is one that has come to mind a lot lately.
You see, I was told once again, early on, that there was a possibility of hearing loss in my right ear due to the radiation treatments and location. I never thought much of this warning, as it was piled in with the million other ‘cover your booty’ warnings…the worst case scenarios. As I went to my weekly clinics with Dr. Frank (already 9 months ago) he would ask about my hearing and I would assure him that I had no issues. Two months, even four months after treatment there was no sign of hearing loss. I was certain I had dodged that bullet (somehow living in Texas seems to make that picture appropriate). But sometimes God has other things in store for us. You see, in December I began to notice a feeling like I had water in my ear (like I had been swimming…and trust me, I had not!). I did all the usual things like trying to pop it or putting drops in my ears. Nothing seemed to work. I went to my ENT here in Austin, Dr. Scholl, and had him take a look. He said there was fluid in my ear and we were going to try to dry it out with Nasonex and Mucinex…none of which worked. A month passed and I was referred to the ENT at MD Anderson, Dr. Gidley (who was a hoot, by the way). A hearing test showed normal nerve function, but decreased mechanical function. The fluid behind my ear drum was filling my entire middle ear. There was no room for it to get any worse. To add to this, my eustacion tube was closed. My hearing was greatly impaired in that ear. That part of it was no big surprise…for months I have felt like my father in law (and have felt FOR my father in law) who has to ask, “What?” when someone asks a question to the bad ear. I am someone who couldn’t hear the alarm going off if the good ear is on the pillow; someone who had to ask their daughter to turn up the TV to a volume that normally would have been just ‘way too loud’. Hear ye, Hear ye…or not! Yes, there is no doubt that I have been impaired. But I took it all with a grain of salt…which ironically is supposed to help with clogged ears J
That brings me to the options Dr. Gidley presented to me. The first option was to do nothing and pray…not just pray, but to “pray for a miracle”. Hmmm, OK, that doesn’t sound too good. He told me it was extremely unlikely that it could heal on its own. The second option, a more medically sound option, was to get a tube to drain it. Well there’s my answer! Not so fast, turbo (who says this anymore??). With the tube would come ramifications that I wasn’t willing to accept. He said that it would be in for about a year and it would come out on its own. However, the hole from the tube would never close because of the radiation. So, essentially I would always have a drain hole and I wouldn’t be allowed to swim in the lake water for fear of bacterial infections. The tube option was quickly eliminated, as the dreams of a summer once again on the lake with my family came back to life. I wasn’t willing to give up the only real thing that my family does together (and has fun together doing) over the summer. I was deprived of it all of last summer because of treatment. My kids were deprived of their mother for months. The lake, no matter how low it is, is not something I am willing to give up. To some that may sound foolish, but I would rather hear out of only one ear for the rest of my life, than not be able to hear Meghan or Molly giddy with excitement, just one more time, as they wakeboard or tube across the lake. So, I quickly told him that the tube was not an option for me at this time, and that we believe in the power of prayers and that’s what we would do. We would pray for yet another miracle, because the Lord has already proven with my eyes that prayers work.
Several months passed since that appointment in January with Dr. Gidley and my hearing hadn’t improved. The loss of hearing and what felt like a balloon wedged in my ear was annoying, but was more of a nuisance than anything else. But something happened on the way to Rockport (that sounds like it should be a song title) this past Spring Break as we traveled the Texas country roads. Something in my ear seemed to pop and instantly I knew that something was different. Sounds were suddenly louder and clearer, but I was hesitant to believe it. As I sat there, I told Will and the girls that something weird happened. I kept covering my right ear, then my left ear to compare them. I knew that I couldn’t hear much before, but now the discrepancy between the hearing abilities didn’t seem as drastic. All of a sudden I became annoyed by the constant rattle that seemed to be permeating from the passenger door (to the right of me). I was hearing things out of my right ear again (even if it was still not normal). I asked Will if he heard that sound and he replied that it had been rattling for the past hour and a half. I hadn’t heard it until then. The rattle must have been some remnant of what was left behind when I had my car repaired (stupid story, don’t ask why). This reminded me that even when we seem to be ‘fixed’, we are still broken without Jesus.After that moment on the quiet country road, where Jesus once again began to heal me, I started to hear the truth once more. Jesus meets you where you are at. Just like Saul on the road to Damascus. Just like He will meet millions more who are open to hear the word. Ephesians 1:13 And you also were included in Christ when you heard the message of truth, the gospel of your salvation. When you believed, you were marked in him with a seal, the promised Holy Spirit.
Yes, my hearing was improved, only slightly, but enough to notice a difference. I could see the prayers working as Jesus heard the prayers of his saints on my behalf. And last week, it popped once again, and as I woke up to go to Houston once more, I had my left ear nestled in the pillow. Only my right ear was open to hear the alarm go off and what sounded like church bells singing praises for yet another miracle bestowed on me. As I sit here writing this, I can hear the second hand ticking away on the clock sitting to the right of me on my desk. Prayer works. Miracles happen. Hear no evil...but hear the truth.
Did you know that God is a techie?? He even butt dials on our behalf! I speak the truth J Read on, as I tell you why. On December 31st, otherwise known as New Years Eve, I woke up with the most unbearable pain. Well, actually I woke up fine. It wasn’t until I brushed my teeth and rinsed that I was brought to my knees in the most unimaginable pain in my face I could experience. It lasted probably a minute or so, but was worse than anything I had experienced up to this point during my entire ‘ordeal’. It reminded me of the excruciating pain I felt on that night of April 18th, 2013 when it felt like someone was stabbing me (that led to my diagnosis). I was sobbing and not sure what was going on. As the pain eventually subsided, I went on with my morning not knowing why that had happened. I made my morning coffee and then had some water with my medication. I was once again laid to the ground, sprawled on the kitchen floor covering my mouth with both hands thinking that would somehow mask the agony that I was experiencing. That if I covered my mouth (just like the little monkey emoticon) it would somehow not be as painful or true. I picked myself up off the kitchen floor once the pain subsided, and I began to help Molly with her science fair project. She was using different types of water to see how sedimentary limestone would absorb them. For some reason, which now is unimportant, I took a sip of the tonic water. Almost immediately the tears began to stream out of my eyes like a faucet and the piercing pain began to radiate through my mouth and face once more, bringing me once again to the floor. I think I had finally figured out the cause. Anytime I drank anything that wasn’t warm I was affected. It was New Years Eve. No doctors were available. I couldn’t drink anything. I couldn’t even rinse my teeth. I was getting fearful of a couple days without water and severe dehydration (no one would see me on New Years Day either). I was contemplating a trip to the emergency room. But, just like always, God was walking beside me.
I’ve already told you about Charlie Snow, my guardian angel on earth (also my dentist), who made me a prosthetic mouth roof even when my doctors at MDA couldn’t because of my mouth opening. Charlie called me that morning which was odd. I hadn’t talked to him in a month or so. He said that my dad (who also knows Charlie) had butt dialed him and hung up. The Lord even uses technology for our sake! If you know my dad, this wouldn’t seem unusual…he and technology don’t mix all that well. Anyways, Charlie saw his # and called him back because he had been worried that maybe something was going on with me. My dad apologized for butt dialing him and did mention that I was experiencing these weird pains. When Charlie and I spoke, he asked me to test a few things and he determined that most likely it was a dental issue. He told me he was coming over to my house and was going to take me to his office downtown so he could try to figure what the source of pain was and try to block the pain at least temporarily. He gave me a shot at the house, which led to complete numbing of the area so I could at least try to get down some fluids. Once at the office, he was able to figure out the exact area that was affected, and he gave me a shot or two to completely numb it. What I didn’t tell you is that he had a friend in town for New Years that he dragged along for my sake. It turns out that I would most likely need a root canal…he would refer me to a specialist. He then told me that he would come over at any time to give me additional shots at home if necessary until that time. And, of course, he wouldn’t accept a dime from me. Whoever said there aren’t angels here on earth, never met Charlie Snow. Hebrews 6:10 God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them. It turns out that the shots he gave me that day would amazingly get me through a couple weeks without pain! I couldn’t believe it…neither could he. The shots should not last in my system more than 6 hours or so. But God is good. After a few weeks, I once again experienced the pain. I called Charlie and he came over to give me another shot. This time it wasn’t New Years Eve, but his wife’s birthday. But he came for me anyways. He managed to get me into the root canal specialist the next day. I have been pain free ever since. Well, with that pain anyways!
Then there is the pain associated with my jaw. You see, jaw pain is nothing new to me. Ten or more years of limited mouth opening and pain have made me almost numb to it. But this pain was more than just the usual aches. I had a terrible infection for the course of about 4 months, due to necrosis of the tumor and dead exposed bone in the palate, both of which were constant sources of contamination and pain in my jaw. My problem with reactions to pain meds didn’t help my situation any, but I managed with a regimen of ibuprofen…lots and lots of ibuprofen. Not to mention the multitude of ‘big gun’ antibiotics to try to clear the infection. It took time and patience, but I have been taken off all antibiotics and am feeling great again. I lost a large chunk of the dead bone (which I thought was a pretzel that was stuck in the hole that I wedged out…I know you’re cringing right now!). This is a sign the infection is clear and my system is working itself out again. I still have some bone that needs to come off, but it’s no longer causing any pain, and having it covered most of the day should speed up that process.But the root (pardon the pun) of evil with regards to my mouth, continued to be the gaping hole in the roof of my mouth and the very small mouth opening that was preventing me from getting a more permanent prosthetic. The hole in the roof of my mouth was the one side effect that I never expected or remember being warned about. It’s not just a hole, but really a complete loss of the right side of my palate due to the dying tumor receding from that area. I don’t think many of you fully understand what that means. It means food getting stuck every time you eat and not being able to get it out without going through multiple tubs of water in the Water Pik. It means water (or even food) coming out of your nose every time you take a sip (or water pik) because the hole goes all the way into your sinus cavity. It means not being able to speak properly without my device… most people have a hard time understanding me (especially on the phone). My tongue doesn’t have a roof to hit properly to make the correct sounds for proper speech. Lucky for me, as I’ve already mentioned, Charlie was able to sculpt out of almost nothing a prosthetic device to cover that hole. Because we couldn’t get a mold of my mouth (due to limited opening) he made something out of nothing…something pieced together and molded and shaped along the way, that was eventually almost perfect. Just like the Lord takes us, nothing, and turns us into something beautiful that He has shaped along the way until one day we are made perfect. Isaiah 64:8 Yet you, Lord, are our Father. We are the clay, you are the potter; we are all the work of your hand.
On my visit to Houston last month, the dental oncologist was finally able to get a mold of my mouth. Finally, after all this time, I was able to open enough for them to get a perfect mold of my palate to make a more permanent opterator (the technical term for the prosthetic…I just call it my ‘mouth’). That visit to MD Anderson with my dear friend Torri, alone warrants its own entry (for another day!). Anyways, it seems like when things go up they must come down…as did my excitement about my wider mouth opening. And when Dr. Afshari (whom I had just met on that last visit) asked if Torri was my daughter I nearly fell out of the dental chair in anguish...that pain I talked about earlier with the pain and root canal, was nothing compared to this knife! Ouch…now I do have to admit that Torri has a very youthful face and glow, but still! On a side note, that wasn’t the first time Torri’s youthful glow tormented her friends. We all went to the Spazmatics (awesome 80’s cover band), and she was the only one who wasn’t carded. ANYWAYS!! After that visit to dental oncology, which apparently stressed my jaw and me just a tad too much, I was unable to open enough to even get in my other ‘mouth’ for over a week. It seemed I was almost back to square one again. I was scheduled to go back on March 4th (also my 45th birthday) to get my new one. Boy, I’m feeling old enough. However, there was no way I would be able to open enough to even get it in at that point, so I rescheduled for later in the month. Plus who wants to spend their birthday at MD Anderson anyways?!? Just last week I was able to get my new ‘mouth’ which fits quite nicely, but there are still adjustments to be made. But I am on my way to this being a permanent device. I now have to wear it 24/7 (which I should’ve done before but I just wasn’t comfortable doing it). I take it out at night and in the morning to clean it, to rinse out the ‘hole’ with the Water Pik, and brush, floss and rinse with mouthwash. Then place it right back in. It takes me longer to get ready to go to bed than it takes me to get ready in the morning! But this opterator, or prosthetic, or ‘mouth’ (regardless of what you call it) is yet another answered prayer. Without it, I wouldn’t be able to speak in a way that I would be comfortable with…and I’m not a candidate for surgery due to the constantly changing status of my tumor. Prayer works. Miracles happen. Speak no evil…but speak the truth.
When I was diagnosed with Adenoid Cystic Carcinoma on May 2nd of 2013, I didn’t understand how greatly my entire head and all its senses would be affected. I haven’t even told you about the pretty severe loss of smell (which sometimes works to my advantage) and just as noticeable loss of taste (I feel like everything needs salt!). We don’t realize how mutually dependent each part is on the next. 1 Corinthians 12:26 “If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” So it is with my body, and so it is with fellow believers and the body of Christ. It was the prayers of my friends and family for my eyes, ears and mouth that allows me to proclaim with all praise and glory to God that prayer works!! Miracles happen…See no evil (I am not blinded physically like they expected); Hear no evil (I can hear out of the ear that would have required a miracle to heal on its own); Speak no evil (I have been given the opportunity to speak through angels on earth and their prayers lifted to heaven). So I will not waste the beautiful gift of sight and hearing and speech, but use it to proclaim the word. Romans 10:15 “How beautiful are the feet of those who bring good news.”
Thursday, February 6, 2014
Conqueror. Warrior. Gladiator. All are words that describe people of great strength, power and authority. Picture the Colossuem in Ancient Rome and men fighting to the death. Picture brave soldiers on the battlefield storming the beaches of Normandie. Picture fire fighters blazing through fire and smoke to enter the World Trade Centers after they were attacked. Now picture David and Goliath. No one would have imagined that the youngest son of Jesse would be able to overtake the giant Philistine Goliath. He certainly didn’t look like a conqueror to the human eye. But, David approached this battle with the belief that God would provide the means necessary to defeat him. After all, Goliath was simply a mortal man. Who has the power to defeat God? No one. And you know how that story goes. Now picture me. I certainly don’t have the stature to look like a conqueror either (after losing most of my muscle and 10 pounds during treatment). I certainly haven’t felt like a warrior (with fatigue and pain). Who am I to defeat cancer? Who am I to tackle the GLADIATOR? But guess what? Romans 8:37 says “No, in all these things we are more than conquerors, through him who loved us.” I AM a conqueror. I AM a warrior. I AM a gladiator. And so are you if you choose to believe in the saving power of Jesus Christ who gives you strength and power you never knew you had!You have heard through previous posts that my goal was to do a “comeback” race. Being athletic and loving to train for events, I thought that just 3+ months after treatment I would be more than ready to attack a course again. I planned an entire weekend full of festivities for my family and friends to commemorate my comeback from cancer. It was time for me to prove that I “Kicked cancer’s A$$”.
I have to tell you that the week prior to this race, I felt worse than I had felt since treatment ended. My jaw pain was near unbearable. I don’t cry easily (what warrior does?) and I don’t break down. But this pain was beyond anything I could fathom. And unfortunately, since the beginning, pain management has been a challenge for me. Narcotics make me looney. But I found that a simple regimen of 4 ibuprofen every 6 hours was the only thing that would mask the pain. If I missed a dose, I would be on the floor crying until the newest meds began to work their way through my system providing relief from this torture. Besides the pain, I had constant chills and redness on my face from the infection that was painful to the touch. My jaw opening was diminishing by the day, making eating a chore. The infection was worse and the hole in the roof of my mouth was like a fishing net used to capture what little food I could eat (the water pik had become my dear friend). I was weak and fatigued and TIRED. I was sick of cancer. BUT… Matthew 11:28 “Come to me, all you who are weary and burdened, and I will give you rest.” So that’s what I did.But, I have to admit, that I also questioned what I had gotten myself into. I was in no way, shape or form prepared for even just a regular 5K. I was physically exhausted. My mom, of course, being a mom, told me not to do it. She told me to check with my doctors. She was worried. I didn’t tell my doctor, by the way, just in case he would have told me not to! In this case I went with the theory that it was better to ask forgiveness than permission J But just like David knew he would conquer Goliath, I knew I would be able to conquer the Gladiator course with the power of the Holy Spirit. So, with that in mind, I tried to ignore all the things that were getting me down, and began to focus on the things that were bringing me up…like my friends.
My dear friend Terry flew out from Rhode Island to be with me. My sweet Shelly flew out from California too. Two beautiful, loving women who hold a very special place in my heart, took time away from their families and spent money that could've been put to better use, all to celebrate with me. I am blessed. With Terry, Shelly and my precious friends from Austin (Chris, Stacy, Torri, Gina and Jen), we headed to San Antonio on Friday, November 8th. Cancer be damned! Terry, Shelly and I drove out earlier than the other girls, and we made a much needed pit stop at the outlet malls in San Marcos. After a couple hours and some fun finds, we made our way to San Antonio. Starving, we stopped at Taco Bell for a quick bite (I was able to eat little soft bites of a bean and cheese burrito). We found it ironic that they had an entire wall full of donation tags for cancer research. Oh, I forgot to mention that Shelly gave me our mascot for the trip, who we named “Hotty Hedgehog”; a Scentsy buddy wearing a “Cancer Plum Sucks” t-shirt. We took pictures of him everywhere we would go, like you would for your kids with Flat Stanley. We would laugh like little girls as we posed him in front of the outlet mall, at Taco Bell and later in San Antonio at all our locales, including the mud pit! Yes, people thought we were crazy people going through some sort of mid life crisis, I think. And, I guess we kind of were!Our hotel on the river walk was a perfect back drop for the events that were to come. All ready to go out that night, we made our way to the other girls’ room where I was greeted with signs that said “Cancer Plum Sucks,” a hammer, and a plum. Well, it actually wasn’t a plum, but a peach painted purple to symbolize the plum (plums were out of season). After scouring the town and multiple stores, Gina came up with that idea J. I headed to the balcony, grabbed the hammer and pounded the ‘plum’ out of that peach, to the cheers of my girlfriends behind me. It was a simple gesture, but significantly profound. It was tangible. I was symbolically beating my cancer, while physically destroying this ‘plum’. I was “Kicking Cancer’s A$$.” A champagne toast would follow (which I could only take a sip because it was too painful on my tongue). All the while, I’m looking at these beautiful faces and loving hearts and wondering how I got so lucky to have such amazing friends in my life. Women of such character; such love; such faith; such devotion. They were such an integral part of my cancer journey, so it was only fitting that they be there with me as I embark on my “comeback” journey and face the Gladiator once again.
We enjoyed a lovely dinner on the River Walk, filled with lots of conversation and just as many carbs (you have to carbo load before a race J). It was so nice for me to see my friends from across the map, engaging and getting to know each other...I was their only link, but it was so special for me to see them bond. Unfortunately, the day had worn me out beyond belief, so we headed to bed early, hoping for a good night’s sleep. When morning came, so did the rain. But it eventually ceased, and the clouds lingered for the rest of the day. We all put on our matching team shirts, emblazoned with our motto, “Cancer Plum Sucks”. A quick bite in the lounge (some oatmeal and fruit for energy) and we were off to take on the day!Getting from downtown San Antonio to the race site was no easy task. It was like a bad episode of Groundhog’s Day, where we kept going in circles trying to forge our way past the construction and find the freeway entrance, only to find ourselves driving past the hotel we had just left once again! Has anyone ever yelled at the navigation lady as she spews out the wrong directions to you? Well, there was plenty of that going on! We eventually made our way (not without much frustration) to the event. Once on the road, the frustration waned quickly and the excitement of months of planning and preparations took over. As we pulled into the muddy parking field, filled with even muddier people, we were greeted by my entire family, as well as Will’s parents who were all there to support me. Team Cancer Plum Sucks was a force to be reckoned with. Just like during my treatment, I had an entire team of support that was going to make sure I succeeded.
After many pictures to commemorate this moment, we headed to the registration where we were given our timing chips. OK, who were we kidding?! Timing chips really weren’t necessary…actually, I wish we didn’t even have them. Unlike races in my past, where beating my time was the most important thing(yes I am very competitive), I had no interest or desire to even look at my time. I didn’t care if someone saw my name in the results and I wasn’t in the top 50%. I didn’t care if I was the last person to finish. I only cared about finishing strong, with pride, with my friends by my side. Nothing would keep me from crossing the finish line.We entered the starting corral, where Dan “Nitro” Clark, the original Gladiator was talking to the crowd getting us pumped for our start time. I don’t recall how it happened. If I just demanded his attention, or if he just noticed our shirts. But I talked to him briefly and told him that this was my “comeback” event from cancer treatments only 3 months prior. He gave me a shout out on the speaker system and along with that my comeback journey began with the sound of the starting gun echoing into the sky.
Pure chaos ensued as we made our way through mud piles, under barbed wire; through tire courses; over, in and out of dumpsters (thank goodness for Will who helped us girls get in and out); over walls; jumping fire; climbing cargo nets; more burpees than I care to remember; climbing ropes; sliding down muddy hills into an even muddier pit; carrying a log (basically a tree) with your teammates; etc., etc., etc. I’m tired just recalling the course! But that morning I prayed and asked God to give me strength to make it through the day. And unlike the month leading up to the event, I felt great. I had energy I hadn’t had, I wasn’t in pain, and I was so happy to be doing what I loved to do. God provided for me. 1 Corinthians 15:57 But thanks be to God! He gives us victory through our Lord Jesus Christ!”There was a moment on the course where we were between obstacles, walking towards the next one on a tattered path that seemed to lead to nowhere. There was an event volunteer around a bend, that commented on the fact that we were walking…like we needed to be pushing harder, striving more. I simply showed him our shirts and said, “I have cancer.” He seemed to then insert his foot in mouth… I was pushing, I was striving, even though to one person it may not have looked that way. You never know another person’s journey, so it is unfair to judge from what you see. John 7:24 Do not judge by appearances, but judge with right judgment. It was OK, because I knew what just being on the course meant for me.
There were several obstacles where Will was required to heave us ladies over a wall or out of a dumpster. The only obstacle I couldn’t complete was one where you had a partner and you had to carry each other 50 yards a piece. Will carried me the first 50 yards, and there was no way I was going to be able to throw him on my back and carry him as the obstacle required. So, just like the last 3 or 4 months, he carried me the rest of the way, with no complaints, with no expectations. He carried me through the mud and the muck of chemo, radiation, pain, sickness, dread, fear and he also carried me through the mud and the muck of this course. But, just like he carried me, God carried us both. Isaiah 46:4 I will be your God throughout your lifetime – until your hair is white with age. I made you, and I will care for you. I will carry you along and save you.I savored every moment on that course. I loved seeing my brother run alongside taking photos. I loved seeing my girls cheering me on in their matching t-shirts. I loved seeing my parents holding signs and smiling as they saw me jumping over walls (this was the first race of mine they had ever come to). I loved seeing Shelly and Torri who didn’t do the race, but were there to support me. I loved seeing my in-laws (who had just moved here) cheering me on despite my mother-in-law being on an oxygen tank. And, I loved seeing the way we all came together as a team. Not individuals in the same shirts taking on the course. But a team of people all working together to accomplish something great. They didn’t do it for their own glory, but for mine. They wanted me to succeed. They knew the price I paid to have this moment. And I did it for God’s glory. It’s amazing what HE can do when you let Him! And I wanted everyone to know it. 1 Corinthians 10:31 So whether you eat or drink or whatever you do, do it all for the glory of God.
I was saddened and shocked to see an email from the Gladiator Event and Dan “Nitro” Clark, who not long after the race in San Antonio had a heart attack. He showed a picture of his first workout and how this was the start of his “comeback”. It was ironic, or maybe simply God, that I had my “comeback” at his event, and now he is having to have a “comeback” of his own. The original Gladiator would now have to learn to be a conqueror too. I have no doubt that God weaves lives and events together as part of a grander plan. What that plan is, who knows, but I wish Dan luck and hope he too finds strength in the only one who matters, the Lord.I also learned just today of a dear workout friend in California, Nora, who had surgery just one day prior to this Gladiator event for colon cancer. As I headed to San Antonio on my comeback, she was just beginning her journey. I had no idea that she was going through that. Today I saw a post on Facebook that they found cancer in one of her lymph nodes and she was to start a 6 month regimen of chemo pills. I know that she believes in our loving Savior, and I pray that she is able to stay strong and find comfort and hope, even in the bleakest moments. God will carry her through this, just as He has carried me, and hopefully everyone who is afflicted with illness of any kind will also seek Him. Please keep dear Nora in your prayers!