Rollercoaster Ride

For the first time in my life, I am on a rollercoaster ride that I wish I could get off. I am so ready for some normalcy in my life with no more ups and downs. It has been a long road (since April) and it is time for it to be over. These last couple of days I have been an emotional wreck. I am so frustrated with the recovery process. It is definitely testing my patience. I don't think it could go any slower. At the same time, I am struggling with my appearance. I know I shouldn't concern myself with the way I look and it is probably vain. But I just want to feel feminine again. My hair is growing back, but not in the places where it was exposed to the radiation. So I look like I have a marine haircut or Vanilla Ice (Yes, flashback to the 80's). My right eye is swollen, has no eyelashes and my eyebrows are just about gone. Make up doesn't seem to help. I am tired of wearing hats...but they are the only thing that I can wear to somewhat cover up my ugliness. I am constantly clearing out the mucus in my nose and throat so I am sure I don't sound so pretty either. I can't wear the clothes I really want to wear because of my feeding tube and IV port. I have been forcing myself to take little walks up and down the street so that I can start regaining my strength. I was hoping that a little exercise will do me some good. But I feel so uncomfortable with the way I look that I quickly want to run back inside the house and hide under the covers in my bed. I am quickly beginning to understand what it is like to be the one people stare at. I feel like a monster.

I am hoping this is all temporary. Please be temporary. Let this be all over soon.

Psalm 6 - "From Psalms for Praying, An Invitation to Wholeness"

O my Beloved, though I have turned from You, continue to enfold me with your love; Be gracious to me, Heart of my heart, for I am sad and weary. Surround me with your healing Light, that my body, mind and soul might heal. How long must I wait, O Lord? I open the door of my heart to You, my Beloved, Enter in and imbue me with your steadfast Love. I shall remember You all my days; I shall sing praises to You throughout the nights. I am tired of so many fears; I cry myself to sleep at night, while grief and feelings of guilt bedim my eyes with tears. All my doubts, my fears, are creating walls so that I know no love. Depart from me, you enemies of wholeness, for the Beloved is aware of my cry; Love has heard my prayer, and hastens to answer my call. Though my fears are running for cover, yet they shall be forgiven by Love; Illusions that lived in the ego can now turn to the Light; I will know peace as I return Home.

Thank God for Facebook

Thank God for Facebook.  It has been a source of many things for me while going through this journey.  Facebook has provided me with entertainment:  I am obsessed with the Facebook games.  My latest obsession is Farmville.  I have been working hard every day to build by farm to plant crops thus earning money to buy more necessities to make my farm a success.  Facebook has provided me with communication: It has allowed me to keep updated on what all of my friends are doing in their lives.  It has also given me an opportunity to have conversations with many of my friends through instant messaging.  Facebook has provided me with a source of encouragement.  A day does not go by when I open up my Facebook profile and I find that someone has left an encouraging message.  Theses messages are a source of comfort and help me get through my day.  And I am amazed at how many people from my past have gone out of their way to make sure I know they are thinking of me. It is amazing.

Well, I can finally say things are progressing.  Not necessarily as fast as I want them to.  But I am starting to see changes which is something I needed to see happen allowing me to feel that I am heading towards living a somewhat normal life again.  I am on my feet more and more and being able to spend more time with those around me...especially the girls.  Yesterday, I was able to go to the dentist with Mackenzie.  She had chipped her two front teeth in a minor biking accident.  It was good for me to be able to go with her to be a source of comfort while she was getting them fixed.  And I must say she was such a trouper.  After getting home from the appointment I sat outside watching Mackenzie ride her bike while playing a few rounds of go fish with Kendall.  It was wonderful.  I even had a chance to visit with a couple of my good friends in the neighborhood I have not seen for a long time.

After my appointments on Monday, we determined that it was time to start weaning myself off of the pain medications.  I am not in as much pain as I used to be.  I am so excited to, some day, be done with these meds so that I can be clear headed again and be able to drive my car!  I had a visit with my Surgical Oncologist and he was able to clear out my sinuses and right ear to give me some temporary relief from the mucus and drainage.  It is still there, but not as severe.  He prescribed a steroid nasal spray that is helping with the inflammation. However, I can't wait for the day until I can wake up in the morning and not have to clean out my mouth and nose from what drained during the night.  

I am still working hard on eating more and more.  The goal is to start cutting down on the tube feedings.  My mouth is still tender so it will be a slow process.  I am still holding out for a miracle that by next week I will be eating better.  I so desperately want to go to the State Fair and have theat footlong corndog!!!  I don't know if it is going to happen, but I am going to cross my fingers.

Although my energy level is picking up a bit, I do find myself taking naps during the day.  I get tired very easily.  So it is no surprise after my busy day yesterday, I am pooped out today.  Luckily a dear friend had the girls over for a playdate today so I am able to catch up on some of my rest.

As for my mental state...I am still working hard on BELIEVING.  I am given messages all around me from things I am reading or from encouragement from friends to BELIEVE that I can be healed.  I still have moments where I freak out and think this may not be over and I might have a long road ahead of me.  But I try not to stay in these moments of negative thinking too long.  I know God is telling me to believe.  To believe in his power to heal and his love for me.  These messages to believe are overwhelmingly and almost in my face.   Is someone trying to tell me something?  I am blessed to have a few people in my life that have felt the Holy Spirit telling them that I will be healed and come out of this just fine.  I certainly hope they are right.  But the nice thing is, when I have my freak out moments, I go to these specific people for a source of comfort.  

So would it be wrong to ask you all to pray for my mouth to be completely healed by next week so I can go to the State Fair and enjoy some of the great good it has to offer?   Well, if it feels funny to pray for that, please continue to pray for healing...complete healing.  And pray that the progress of my healing continues to pick up pace and that the side effects will end soon.

Blessings to you all,

Sue

Short and but not sweet

Hi everyone.  This blog is going to be short but not sweet.  I really don't know what more to say right now other than I am still living in misery. I wake up every morning in tears.  The first think I do before the day starts is clean out my mouth  and nose from all of the mucus that gets built up overnight.  It is pretty gross.  I continue to fight nausea from all the mucus that drains in my stomach.  And I am still pretty tired.  

I had several doctor appointments this week and each one confirmed that I have a long way to go before I start to feel normal again.  I can't help but break down and cry when I hear them say this. Everyone tells me that someday I will look back on this and feel great again.  But it is hard to keep hearing this over and over when you see very little changes taking place.  

My Radiology Oncologist suggested we do a MRI to make sure the cancer has stayed put and has not spread.  It is pretty routine, but it scared me to death.  It is not something I wanted to face anytime soon.  Will they be able to tell if the cancer is gone?  I am not sure.   

I know that I have asked you over and over again to keep praying, but that is all I need from friends and family right now.  Prayers are what are going to get me through this and the increase the odds of healing.  So again, I will ask you to pray.  

Love,

Sue

Patience

Sometimes I say that if this cancer doesn't kill me something else will.  Well, Sunday morning I made a mistake that did nearly take my life.  

Sunday morning, I had a wonderful time visiting with my high school girlfriends, some that I have not seen for quite some time.  They were all together for our 20 year reunion that took place on Saturday.  So not only did I enjoy seeing them, but listening to the fun stories about what took place at the reunion.  

After they left, I was home alone. My parents took the girls out of the house to give us some space and Jason was out at the PGA tournament with his Dad.  I decided to take a nap and give myself some IV fluids.  I give myself IV fluids every day to keep hydrated.  As I was getting the IV fluids ready I forgot to do one step of the process which was take the air out of the tubing by priming it with the fluid.  I hooked myself up and started infusing.  Just as it started I realized what I had done and before it was too late, all of the air in the tubing had been infused in my blood.  I panicked...I knew what the implications were should a large quantity air enter my blood stream.  I immediately called my Dad and he told me to call 911.  There was no way to get a hold of Jason because the PGA did not allow cell phones on the tournament grounds. While waiting for the ambulance to arrive, I called my Dad back.  I did not want to be alone and I wanted him to be on the phone with me...I did not want to die alone.  I was so scared.  Once the ambulance drivers arrived they calmed my fears, a little, by letting me know that if anything were to happen it would have happened already.   However, the doctors wanted them to take me to HCMC where they have one of those chambers that can get rid of air in the blood system.  Often this chamber is used for scuba divers.  I arrived at the ER and shortly after my Dad arrived.  It was good to have someone there with me.  The doctors confirmed what the ambulance drivers said that if anything would have happened, it would have happened by now.  But I was still at risk for a stroke within 12-14 hours after so they wanted to keep me overnight for observation.  They also did an ultrasound of my heart to make sure there were no air bubbles.  If there were, they would have immediately placed me in the chamber.  Luckily there were not.  They placed me on a neurological trauma ward where throughout the night they would perform neurological tests to make sure I was not having any side effects of the air.  They also consistently gave me oxygen which helps to diffuse the air in my blood.  Throughout all of this, I was having a hard time keeping calm.  It was just too much handle on top of everything else that am dealing with.  Luckily, I was sent home Monday morning and told I should be in the clear. 

So I guess maybe it isn't my time quite yet.  God helped me pull through something very serious.  Maybe this is a sign that God isn't ready to take me home quite yet and that I will also survive this cancer?  I certainly hope so.

These past few days have been rough for me.  This recovery process is so long and difficult.  Changes are few and very minor so it is hard to recognize the progress.   My patience is wearing thin and I am having a hard time trying to be chipper and positive.  I do spend the majority of time in my bed - the one place I feel comforted and a place for me to hide away.  I watch too much TV and spend a lot of time on Facebook and play Farkle, Bejeweled, Bubbletown and all of the addicting games on Facebook.  I shop online for school clothes for the girls.  I am too afraid to shop for myself...it seems overconfident.   I often ask my kids to cuddle with me in bed, but I have to bribe them with the Disney channel to do so.  They would rather be outside riding their bikes.  However, they are good cuddlers when I can get them to agree to climb in bed with me.  So I get pretty lonely up in my bedroom because everyone is so busy with every day life.  Jason tries to pop in as much as he can, but if I had my choice I would have him laying by my side all day playing cribbage and watching HGTV.  Although he hates HGTV.  It is so had not being able to participate in everything going on around me.  I was so disappointed I could not go to my reunion.  (By the way, my classmates wanted to let me know they were thinking of me and presented me with a book including written messages of encouragement.  I was so touched) I am thinking the State Fair is not going to happen as well.  I was hoping to get to the cabin over Labor Day weekend, but I am not sure that will happen as well.  

Am I getting depressed? I don't think so.  My doctor said it is common for patients at this point to get depressed.  But I am very down.  My biggest fear is that once I start to feel myself again, it will just start all over again.  I will have the scans and surgery will be required.  I just so desire to have some time to feel normal and enjoy life before the scans are completed and if this cancer is gone and I require further treatment.  Don't go down that road...I know I know. Believe the cancer IS gone.   The only thing that will help my spirits to rise is relief...relief from the inflammation, the mucus pouring out of my nose, mouth and ear.  The ability to eat whatever I want.  It will take a miracle for this to happen overnight so I will have to be patient...again.

Please pray for me.  I am needing it.

Mushroom and me

Yesterday, we had a very special member of our family move on to bigger and better things. Mushroom, the butterfly, finally came out of his Chrysalis.  It was a really special moment for us to witness such a miracle.   Once Mushroom came out, we put him on the table on our deck and we sat around watching him prepare to spread his wings and fly.  Jason was the only one that lasted long enough to actually seem him take flight.  The rest of us got impatient and went about our business.  Luckily, Jason captured the moment on film.

As for myself, I finally feel like I have turned the corner in my recovery process.  My mouth sores are starting to heal and my energy level is starting to come back.  I still feel pretty miserable, but at least I am not getting any worse.  The most frustrating thing for me is having to be patient.  It is hard to wait for things to get better.  I wish there was a button I could push to fast forward 2-3 weeks.  It has been far too long feeling sick and down under.  I am ready to feel "normal" again.  Although, will I truly ever feel that way again?  

I am also trying to keep my fears in check.  Sometimes I start to freak out wondering if the cancer is still there.   After all I have been through, it is hard to imagine to have to back down that road again or to have to endure a very complicated surgery to have the rest of the cancer removed.   I don't know how to not be afraid.  It is easier said than done.  But I am hoping as I get better, the more busier I will become therefore the more distracted I will be, preventing me from thinking negative thoughts.  Right now, I have too much time on my hands as I lay in bed trying to recover causing to me to think to much.  

I read an amazing verse today that has given me a good perspective on having patience while going through this suffering:

1 Peter 2:19-20 "For one is regarded favorably, if as in the sight of God, he endures the pain of unjust suffering.  After all what kind of glory is there in it if, when you do wrong and are punished for it, you take it patiently?  But if you bear patiently with suffering when you do right and that is undeserved, it is acceptable and pleasing to God."  

Please continue to pray for a quick recovery and for the cancer to be gone!  Also, please pray for peace of mind so that I will not get overwhelmed by fear.

Thank you all for your prayers.  I can't believe how many of you continue to send me encouragement through cards, gifts and messages on my blog.  It helps me to keep going!!!

With much love,

Sue

Fingers Crossed

I wish I could say things are slowly getting better, but they are not.  They are slowly getting worse.  I guess this is typical for patients in the immediate weeks following radiation therapy.  After my appointment on Monday, I got a reality check which was tough to swallow.  (no pun intended)  I had high aspirations for my recovery and thought I would be feeling a lot better by now and that eating would start getting easier.  Unfortunately, it is quite the opposite.  The weeks after finishing radiation are the worst for the patient.  The pain, nausea, mouth sores etc...hit their peak.   And it is true!  I am completely miserable.  I spend a lot of time sleeping and trying to keep on top of the pain.  Constantly pill popping, mouth swishing, tube feeding, IV dripping, nose irrigating, nasal clearing and more.  It really takes its toll mentally.  Just when you think you are finished it just gets worse.  Throughout my treatment I heard from many different doctors and nurses what to expect during recovery.   Of course, I clung to the most positive expectations for recovery, but I don't think they were the most realistic ones.   So you could say that I am a little frustrated.   Patients also tend to go through deep depression.  I can understand why...after going through a very difficult treatment, it is hard to face a very difficult recovery.  

So I am sorry to report nothing exciting about my recovery.  Although, to be honest, I am keeping my fingers crossed behind my back secretly hoping that my recovery will go a lot quicker than what they told me.   I am still looking towards my goal of chowing down at the State Fair.  I will be the one in the wheelchair (due to lack of energy) visiting every booth possible.  

Please do pray for a quick recovery and for mental strength.  It is hard to not be anxious not only about getting better but about whether or not the cancer is still there.   Thank you!!!