Joy in My heart

Wednesday, January 26, 2011

| | |
While reflecting back upon the last 22 months of my life, I got a jolt of JOY in my heart. As I recalled each turning point and each revelation the Lord lead me to, my heart pounded with more JOY, JOY, JOY! Some might say, "she is crazy", "she is lying"..."she is in denial!"  Well, I have felt crazy, I have been a liar, and I have walked in denial and thank you Jesus for forgiving me of them all! But this time, I can honestly say, without feeling crazy, in all honesty and fully aware of what I am up against, that my heart has never known such joy!

In case you are new to my life or my blog, perhaps you don't know what the last 22 months
of my life has been about.  To say it's been about beating cancer would be the most obvious response, but really it has been about getting to know the Father, the Son, and the Holy Spirit.  In a brief summary (sorry I think I just lied again because if you don't know me, this will not be brief~lol) to get you caught up. I was diagnosed with anal cancer (squamous cell carcinoma) in March 2009.  It began with a change in my stools and the frequency of which I was having to go to the bathroom. I had decided that turning 30 was going to be my best year ever! So, I bought a hockey stick, hockey skates and gathered as many hockey moms as I could. We were going to learn how to play hockey~who said 30 is too old?! And then to make living in Maine during the winter a little more bearable, I bought a snowboard and decided I was going to learn how to snowboard.  This meant I had done some falling down in the weeks leading up to the soreness I felt when sitting so of course thought it to be nothing more. Well, the more days that went by without any relief of the discomfort or reversal of my frequent trips to the bathroom, I decided it was time to call the doctor.  Although I had felt something the morning of my appointment, I thought it would be something as simple as an internal hemroid, nothing life threatening. I was scheduled for a CTscan that showed a mass of 4cm but still was not sure what that meant. I was turned away by a surgeon who thought I had to be in the wrong place and referred me to a gynoclogist. She found the mass but I was told once again I was in the wrong place and that the surgeon should have looked at me. She at first thought that it was a cyst and attempted to alleviate the pain by draining it and this is when we heard the first of what was to be one bad report after another.  She said, "I need to prepare you for the worst. It is a hard mass that could be cancerous."  As my husband and I held one another, I remember saying "all I want is more time" and the first revelation that came to me was "the Lord has prepared me for this!" He did not choose to save me 18 months prior to this moment for no reason.  I then went for a colonoscopy where 7 biopsies were taken.  I remember the day I got the phone call like it was yesterday.  I'm not sure what was harder, hearing the results or having to tell my family.  The two weeks leading up to my start date for treatment was a whirlwind! Scans, bloodwork, tattoos (mapping on skin where radiation would take place), family meetings, meeting and choosing doctors and medi-port put in for chemo infusions.  Looking back, I can't believe what was actually accomplished in two weeks, but that is how fast we needed to move because the cancer was stage 3b and had already spread to several lymphnodes, proving itself to be very aggressive.  Aggressive cancer, aggressive treatment. Treatment started on April 14th with radiation, five days a week and chemo the 2nd week and the 5th week.  The first round of chemo gave me mouth sores so bad, I couldn't swallow water or even talk, not to mention the pain meds I was already taken that led to severe constipation.  I was so tired so fast that most days began on the couch and ended in bed until the day came where there was no beginning and no end.  My days were spent with the Lord literally carrying me to the bathroom, in and out of the bath to clean my burnt skin to prevent infection, giving me just enough strength for me to literally crawl back to my bed and curl up in a ball of pain that I can't even describe, that was like nothing I had ever felt before, and never wanted to feel ever again! These days and nights all blended into one LONG moment for me and my family. I remember moments of chills and shaking so bad that my husband had to wrap me so tightly with the heaviest blankets and then hold me as tight as he could to ease the pain and still my body until the shaking past. There were a lot of back and forth trips to the hospital for treatments and  for fluids. If there was a side affect listed, I had it.  And then one day I didn't make it to the bathroom. I laid in my own pool of vomit, urine and diarhea. And all I could get out hoping my husband would here in the next room was, "something is wrong."  I remember being put onto the stretcher and carried out into the drizzling rain and into the ambulance. I remember laying in the ER and finally after weeks of pain, suffering and holding on, I said, "please just make it stop!" And that is when He took me to a place of rest because I do not recall much of anything that took place over the next two days.  When I became fully aware of what had happened I was at Maine Medical Center in Portland, just thankful to be ALIVE! Pain was under control. I could see my husband and hear him and was even able to speak to him.  It was 2 weeks of nursing me back to a physical state in which I could return home...blood and potassium transfusions and waiting while my blood counts finally reached a place of reassurance for my husband and those waiting on the other side to hear how I was doing.  I was able to finish up my last two treatments and then after trying several failed attempts to come off iv pain med, I was released with a pump to help control my pain  to at least get me home where I belonged.  After a couple weeks I began to wean off the dilaudid and was feeling okay, until 24 hours after having the pain meds taken away,  I began to feel  sick again!  Come to find out I was having withdrawals from the pain med and had to be put back on oral morphine. It got better. I was no longer dependent on the pump and as the morphine helped in managing my withdrawals I was determined to be free and clear of that as well, so I began to wean off those.  This was hard because as I would start to feel withdrawal symptoms that meant I would be confined to my bed or the bathroom for even one more second, I would pop another pill just to make it all go away.  Finally, I picked a day and stopped. I went through some withdrawals but devoted the next few days to just getting through them and before I knew it I was getting back into life and was back on the ice!

Almost a year ago today and exactly a year after my diagnosis, I was sitting on the table during a routine check up and my doctor asked how I was feeling.  "I feel great (compared to how I had felt months before). I am playing hockey and I am taking care of my kids, my husband and my home again.  And he responded, "if I didn't know what you have been through and hadn't seen you as sick as you were, I would never believe it."  And then he said, "there is a spot on your liver.  It is small but it concerns me and given your case we need to have it biopsied."  Well, that was almost like having the wind knocked out of me...little did I know that that same gust of wind would knock me down a few more times.  So I went for the biopsy and of course it couldn't just be a simple in and out procedure like they anticipated it would be. I had a rough time with the biopsy, spent a little time in a familiar place the Lord likes to take me, in His arms where I am no longer fighting and striving, but simply resting and at peace.  After what was suppose to be a 2 hour process that turned into and ALL day process I was finally discharged and came home. I was not in a hurry to get the results and I think this was hard for those who love me to understand, but I am also learning that it's the Lord's way of preparing me and showing me that these tests are just results and are NOT what I should be living by, but by Him and His word and His promise and in His comforts and peace that only He can provide.  And so I waited for the results and when I finally got them, it hit hard (a 1.9cm tumor) but not as hard had I not had the time to spend getting to know Jesus a little more while waiting.

 Surgery was the clear answer for the doctors, but it was not so clear for me. And this is where I spent much time asking, seeking and waiting upon the Lord for some clarity and direction.  This is when whether she realizes it or not, the Lord used my mother and a small town community to make big things happen.  Meetings were held, fundraising was done, and prayers were being sent out around the clock and literally around the world! Although I believed and still do very much in the alternative therapy that I was praying about, I also needed to be sure that it was the Lord's will and not my own or that of any other's.  Because, no matter what, He is the HEALER and He is the great Physician and since He had allowed and created a way for me to receive this treatment I once again had to become still and this is how I knew that this was a trip that He had planned for me to take.  And before I knew it I was skating on the ice for my last time, meeting people for the first time who didn't even know me but were supporting me and  making it possible and then preparing to board a plan to Hawaii with my husband. ( I will save my accounts of our trip for another post.) I was saying goodbye to one way of life as I took off the old and put on the new. 

Once home from two weeks of vitamin c infusions, coffee enemas and the most bland eating one could fathom, it was not long before some physical pain at the site of my tumor began.  What now?!! I called my doctor in Hawaii and we altered my therapy a little to see if it made a difference.  Yes and no.  The pain subsided and I resumed therapy again.  I had some "flare ups" that were normal and by the book for this type of therapy and was a part of the heavy detoxing that my body was undergoing. And although this therapy was so rigid and so long and so demanding of my time and energy, I was detremined to see it through as I was my conventional threatments the first time around.  But, I also spent much of this time asking the Lord if I was to continue on this way? And I would just keep getting a "wait, Kylee. Just keep on and wait for me."  So, I would wait and while I waited I kept on with therapy until the pain on my left side came back and this time it was sharper and less tolerable.  So once again I called my doctor in Hawaii and she said the only way to figure out what could be going on and causing this pain would be to have a scan.  The pain at this point was not a pain that I was able to bare much longer, so I drove myself to the ER rather than waiting for doctors to call in and order me one and asked for a CTscan.  This was not easy because with all the detoxing that I was doing I was not wanting to have anything toxic poured back into my body, but I had to do what I had to do in the moment so that I could move forward in whatever direction the Lord was about to lead me.  The scan showed that the tumor was 4cm.  This was unsettling to me because the tumor was growing and had doubled in size in 3 months.  However, I was not prompted to move or move quickly so I went home and called my radiation oncologist to go over the results and once again he encouraged me to reconsider surgery but would support me either way.  I had read many stories of others doing the Gerson therapy and their tumors getting bigger before they began to shrink and I was not being prompted by the Lord to stop and do surgery at this time.  I certainly did not want to do surgery, but I certainly did not want to be doing this therapy either, so I spent the next three days after very close to Jesus. I remember the night I laid in my bed and wept with Him and for Him and what was revealed to me was that my suffering and my pain and trials were nothing compared to His! And if I was questioning even up until that moment if Jesus really was who people say He is and who God says He is, I did not question anymore because you do not feel sorrow, or sympathy for someone or something that is not real the way I felt it that night. And in the midst of crying for Him and crying out to Him, he gave me Judges 6:23! Are you ready for this one? In Judges 6:23 the Lord speaks and says to Gideon, "May peace be with you! Do not be afraid. You are not going to die." And this is how He changes sorrow, fear, worry and anxiety into JOY!!  The tears that I cried in those moments leading up to this passage turned to tears of JOY! Joy, because although I was not playing hockey, I was not making love with husband and probably never will again, or able to sit on the floor or hold my kids the way I once could or eat whatever I wanted or ever have the option of having another child, oh the list goes on, I was ALIVE. I was breathing. I was seeing. I was hearing. I was able to speak. I was able to walk and so too does that list go on. And then as I rolled over and closed my eyes and slept well for the first time in a long time, I felt His peace.

That night He took me to another level of believing, hoping and understanding of who Jesus was and is today!  And so my love and my desire to know Him better did not end but neither did the pain.  The next thing I knew I was on the couch curled over in pain that took my breath away.  I hadn't eaten more than a handful if even that in days due to the pain.  Then the pain began to move throughout my left shoulder and along my left side...and this is when I went for another scan that showed the tumor to now be 6.9cm.  There's the knock you down kind of wind again.

 How can this be?! I was still unsure of what to do at this point.  My doctor looked me straight in the eyes and said "you are dying of anal cancer."  Dying? I never thought I would hear the words "it's cancer" and even after hearing those words and living through it to tell about it, I still never thought I would hear "you are dying"...just don't ever think for even one second that it can't happen to you or that it won't happen to you because it can and it did to me. I believebeause of the toxic world we live in today and continue to go on living without detoxing and making better choices,  it's not a matter of if you will get cancer, but when. You may just be one of the ones who outlives it and even better, never know you have it.

 So now, I not only have a rare cancer, rare reaction to treatment and 1 out of every thousand or more in which it metastisizes, now I am dying?  And so I went back to Judges. I went back to Joshua 1:9. I went back to Psalm 91. I went back to Isaiah 40 and 63 and Psalm 118. I went back to so many of the places that the Lord has taken me, and as my life and what He has revealed to me up until that point flashed before me, I chose to take those results that I saw on that screen and the words that I just heard spoken to me and handed them over to the only Physician who really knows and asked Him, "what do you want me to do with this?!" Because what I wanted to do in that moment was cry, cry and cry some more and then I wanted to do everything I have ever dreamed of doing in the next 24 hrs and that included watching my children grow up, graduate, get married and knowing if even for one minute what it feels like to be a grandmother to the children of the ones that I gave birth to and loved so very much and to live one day alone with my husband like we've never lived before.  And as the Lord reached out to take what I had given him, I was given back this: reasssurance, and restoration! And a realization, that yes, I am dying, but I am dying to myself! I am dying to my old ways, ways that were not working, ways that were not good, ways that were meaningless and I was finally coming alive!

 So this would lead me back to the blog entry when I met my surgeon and had surgery to remove the tumor and chain of lymphnodes as well as part of my stomach lining and gall bladder.  And so when I went back for my check up and to hear the words "chemo" again, you can only imagine the wind that swept through me.  I left the doctors office that day a mess!!! I had never prayed out loud in front of my husband like I did on this particular ride home.  I opened my Bible and read it out loud and although God did not need the reminders; I needed to remind myself and my husband of the promises that the He made me and then I cried out to Him! I did not want to do chemo again! I would be lying if I said I was not afraid of what the chemo would do to me. But as the Lord has never forsaken me before, He did not leave me in this sorry state either. He took my cries and He took my tears, he dried my cheeks and comforted my heart.  He reminded me that I just needed to release, let go and keep on in Him.  And this is what I did.

Later, we met an onocologist in Boston that was not able to give us what we wanted to hear or even an ounce of hope, so I went to the one who I knew could and has all along. "Lord, they tell me I am dying, that I have a rare cancer, that because it has spread to my liver and lymphnodes and is therefore in my bloodstream that I will always be at high risk of it popping up or spreading elsewhere.  They say there is no cure, but maybe we can control it at least with more chemo.  Really? Chemo? Lord, you know what it did to me. You are the one who pulled me through and restored me back to health.  That is becoming clearer and clearer everytime I relive this story, so what is it that I do now?"  And he replied, "take a break."  So, I gave myself a little vacation, had myself a Merry Little Chirstmas and a Happy New Year. On the day He prompted me to pick up the phone to schedule my next scan, while I waited for the doctor to come to the phone, I heard loud and clear, "it will not kill you, it will not kill you, it will not kill you."  Yes, three times I heard it.  This is not self talk or pumping myself up for what might come next. This was the Holy Spirit speaking straight to me.  Although I had not even gone for my scan yet, I knew that it was not over, that there was a reason I had taken more time to heal, to gain strength and more for God to teach me.  And although I always remain hopeful that the next test will be clear and nothing but good news, I also know when the Lord is preparing me for just the opposite. This is yet another revelation! That what He is trying to teach me is how to NOT be knocked down by the wind! Because the wind is going to blow and storms are going to happen.  I have no control over that.  But I am learning not only how to build a strong foundation, but how to stand firmly upon it!  And so, the day I got the results, yes the wind came, and yes I cried, and there was sadness shared, and even though I did not receive good news from the test results, the good news was that this time it did not knock me down!!!!! Oh, how good is our God?!! He is an awesome God and God is good ALL the time! What would have normally taken me days to recover from, took maybe an hour or two of sharing, releasing and simply letting go.  And never before have I awoke the next day after receiving bad news with joy in my heart and still a bounce in my step. Not like this.  And so there was no hesitency in what I was to do next and that was to meet with the oncologist to try chemo again. That brings us to where we find ourselves today.

Todd and I met with the oncologist that I was referred to here in Lewiston, rather than having to travel to Portland because if there isn't anything different they can do for me in Boston then I much rather be as close to home as possible. Well, come to find out the one I was referred to is also the one that was on call the day I was admitted to the hospital the first time around, so my case was not exactly new to her, however I had no recollection of her whatsover since I only remember bits and pieces of that time.  But what was revealed to me before, during and after this appointment was just how much of it my husband remembers.  He remembers it ALL as does my mother, the two who vividly remember what they saw and heard for weeks coming from my bedroom or bathroom or even during some of my treatments.  I took a moment to not just hear the fear in my husband's words as he spoke of what he remembered, but what I saw in his eyes.  And for the first time I was seeing what he saw as best I could.  I imagined for a moment what it must have been like to not just hear my moans and groans as he watched my body wasting away, hair falling out, skin as black as the pavement peeling away to red exposed flesh in my most private and sensitve areas, wiping up diarhea or vomit only to have to do it all over again at a moment's notice.  And then to see me no longer even be able to make it to the bathroom but to watch my body lying in feces and urine and lifeless as it was carried out of our home, to the hospital where no reassurance was offered because there was no real explaination of what was happening to my body.  It wasn't until we ended up at Maine Med at the Gibson Pavilion that he felt some peace and reassurance that I was going to be okay.  I knew because I knew the Lord had me, oh did He have me! And He still does!

 So as we sat in another doctor's office on Monday and talked about releasing, letting go and simply sharing as the Lord showed us a new way of connecting.  As we walked out and I turned the corner there was a man holding his young daughter.  Not just any man, but the husband to a wife in the next room that was recently diagnosed with breast cancer, our age, who too has two small children. A woman that I met at my children's school and a man that was facing the same fears and seeing and hearing some of the same battle cries that his wife is enduring right now.  And as men don't often do, they sat and just talked, well as good as men do~LOL~and really no words are necessary when sitting next to someone who is living it.  But, how amazing, that God would have us there at that exact time, needing others to relate to and share in this with.  And not only was this man sitting there, as we were leaving a door to one of the rooms opened up and this woman, mother, wife and new friend stepped out in the middle of her apointment. She heard me! And she came out and the Lord wrapped His arms around us both as we held one another and cried, not having to say a thing, but simply knowing what we were going through, what we were up against and nothing more but being in the moment. These are the divine appointments that as crazy as it sounds, make this not so fun part of our journey worth it!

Now I am just waiting for my appointment to have my port put back in.  Was really hoping to not have to have that done, but what's one more battle wound.  And after it's done it will make what's to come a little bit easier. Once the port is in, I will then have an appointment to do exams and bloodwork and set the start date for the first cycle of chemo which will consist of 5Fu administered at a continuous drip 24hours a day for 4 days and cisplatin given once in those 4 days. Then 3 weeks off. This will be repeated 3 times and then will scan again to see if it is working.

Right now I am trying to figure out what types of alternative approaches I can be doing and supplementing that I can still be doing while on chemo to maybe help lessen the side effects since this is going to be one of our biggest challenges, while watching my blood counts and reactions very closely. So, while we wait I am standing firm and will not be shaken.  I will not grow weary or faint, but press on toward the goal.  And I am keeping on with JOY JOY JOY down in my heart, down in my heart to stay! Thank you Jesus!

10 comments:

Laurie at Turner Farm said...

Jesus, Loves us this I know ~~~~~
Love you sweet girl ~ xoxo ~

ADO said...

Kylee,
You are truly a woman of God,A mother in Christ and a wife in the Lord. Rest assured He will carry you through this and wash your body and soul in order for you to go on this journey. Many, many prayers are with you and your family for strength and healing. Continue with joy in your heart, my dear for you are loved!!
Keep on Kylee!!
Love to you
Alisa

Kyle, Kerrie, Devyn (10), Corbin (7), Landon (3) said...

Strong and compelling, Kylee. Your perspective is amazing and inspirational.

andrew said...

Its so hard to fathom what you have been through in such a short period of time. Debra and I may not see you as often as we should but we are always blessed by you post on facebook and your devotion to the Lord and how much faith you have in him. We say thank you for that and for you.
Love Debra and Andrew

Tasha Moran said...

I was looking through my facebook friends posts and came upon a mutual friends post with your blog in it. I sat down with a cup of tea and just opened my heart to your words. I am so humbled by your blog. It’s truly amazing through all the pain and heartache you still find the strength to journal your journey, and what a powerful and inspirational and spiritual journey it is. My thoughts and prayers are with you and your family. May god continue to guide you and give you renewed faith and strength! God Bless

ain't for city gals said...

Kylee, oh my....I read this post this morning...I have not stopped thinking about you all day. What you ...and your family...have done. I have read your mom's blog since the beginning, I think. I only wish the best for you and yours...may you find the strength you need...above all else I wish you joy!

Anonymous said...

Hello Kylee - I know you through your sister. Although we have never met, I admire you for sure. I'm continually amazed by you. I sincerely hope that you have a lot more time on earth. Please continue to keep us updated.
April M

Tanya M said...

Kylee,
Our God is using you in amazing ways... the lives that you have touched just by sharing your faith and journey is priceless! Liftin' you and your family up with prayers of comfort, strength, healing, and of course joy!
Your sister in Christ,
Tanya Morissette

Bonnie said...

Kylee,
I'm in awe of your strength and your love and your Joy in the face of everything you have been through.

You don't know me, I saw your blog through a friend of mine, but I wanted to tell you how much reading these words meant to me. You see, I'm a cancer survivor...yes survivor. I have been in remission from Level 4 Melanoma for 9 years now. I was 32 and newly married when I was diagnosed. While I never endured the the kind of physical pain you have clearly experienced and continue to experience, I was faced with the same fears and joys, and anquish that you feel still today. It was a very scary time for me and as a mother of two small children I too fear the results of every "next test, next scan, next check up".
However, until I read your blog I had forgotten the devistation of that time in my life. After several years passed it was back to the old way of life and back to the old way of thinking. Lately I've been feeling sorry for myself for things not relating to my health and really things that don't matter in the grand scheme of life. So I wanted to tell you thank you. Thank you for sharing your story. Thank you for your Joy, thank you for your possitive attitude. I'm reminded of what is important in my life. And as sit here typing this with my 2 year old on my lap holding me I'm grateful to have my life, my children, my husband and a to be looking at a future with all of them. Keep fighting, stay possitive, and keep writing. I'm proof that the monster can be beat. I'll be reading and praying for you and your family.

Tanya M said...

This is a song that reminds me of who is in control during our trials! Liftin' ya up in our prayers Kylee! Tanya M

Big Daddy Weave - Hold Me Jesus
http://www.youtube.com/watch?v=sXN0m3Dr30k