5/5/2010

There must be an opposition in all things…

I’ve come to understand the perk of “there must be an opposition in all things”. While the devastating side of opposition is painful to the point of raw anguish the perk side of opposition is the most glorious joy. Today was a day of “the perk side of opposition” or in other words … glorious joy!

We entered the Chemo office at 8:00 a.m. with trepidation churning in our guts. What would this poison do to Jay (nausea, vomiting, severe fatigue, diarrhea, numbing of the hands and feet, etc, etc.)? We walked through the door feeling like we were walking to our own execution. We just followed the nurse right to the spot where the poison was to be administered without handcuffs or police insistence. I kept thinking to myself, “who willingly does this”? Of course, the answer came right on the heels of the question, “only those with no other choice”.

We walked into suite #120 on the 11^th floor of the James Cancer Institute and to my absolute surprise the entire side wall of the room was glass. These glass windows looked over the beautiful city of Columbus. The sky was electric blue (very strange for Ohio), the grass was vibrant green, the trees danced in the breeze and if you tried hard enough it almost felt like you could see into forever. This was the beginning of our climb out of the devastating side of opposition.

Every nurse, orderly, doctor, and receptionist were kind, gentle, efficient, and knowledgeable. Blood was drawn and analyzed, history was taken, vitals were obtained, chemo drugs prepared, and insurance information gathered. The moment of great dread was upon us. The chemo drugs began to drip into Jay’s body, one drip, then two, three hours, then four. As the hours passed Jay seemed to become happier and happier. What? ---Could this be?---No side effects? He felt strong and calm and strangely liberated. When you believe that you are walking into the death of your quality of life but actually receive an increase in your quality of life, now that is “a perk of opposition”, that is glorious joy!

Even though Jay has a 48 hour chemotherapy fanny pack and it is only day one of this enormous journey---we don’t care!! TODAY life feels GOOD! TODAY life is good!! TODAY life is full of glorious joy and we are inhaling it!!!

I love you all!

Susan

5/4/2010

MAPS and FACTS…

The oncologist's appointment gave us the facts we were looking for. Some good---some bad, nonetheless we now understood the direction we would need to head. We have chosen not to focus on the statistics because as the oncologist put it...WHO IS REALLY AVERAGE AFTER ALL? The statistics are important to know but more important not to focus on.

So what is the "MAP" set forth by the oncologist?

1. Jay was scheduled for a "port" placement (placing a permanent catheter into the artery just next to the shoulder) for April 27. The purpose of this catheter is to provide a door for the chemotherapy medications, CT scan dye, I.V.’s, etc. without having to start an I.V. at every visit.

2. Chemotherapy is scheduled to begin on May 5, 2010. He will arrive at 8:00 a.m. and the nurse will administer the first 5-7 hours of chemo in the chemo suite. They will then connect him to a “take home” chemotherapy which will be continuous for the next 48 hours. At the end of the 48 hours a nurse will come to our home and disconnect the chemo from the port. Jay will then repeat this process every 14 days.

3. CT scans will be done every 2-3 months to check on the shrinkage of the tumors.

4. Blood work that reveals “tumor markers” will be done approximately every month.

5. If the chemotherapy is successful in shrinking the tumors the next step will be surgical intervention. The cancerous portion of the liver and lungs must be removed. They are hoping to proceed in this fashion at the 6-8 month mark.

Update…

Jay’s port has already been placed. The placement was extremely successful. He is getting stronger every day. Now that the bruising and swelling have disappeared it is difficult to even see the port. I can run my hand over his skin and feel it, but it is almost nonexistent to the naked eye.

Jay is concentrating on keeping weight on. He began this process at 228 and is now at 207. Needless to say he is now looking for high calorie foods, and a large quantity of them, while food still sounds good.

What’s next…?

Our first appointment at the Huntsman Cancer Institute is scheduled for May 26, 2010. We will be meeting with an oncologist named Dr. Sunil Sharma. The James Cancer Institute and the Huntsman Cancer Institute have been in communication and it appears that Jay’s “MAP” will remain the same in Utah just under a different doctor.

Thank you to all of the fingers and toes, hands and feet, hearts and souls, that have enveloped us in love, care, and hope!! We love you all!!

Susan

04|23|2010

I'm in a nightmare...or is it a dream?
On Thursday, April 8, 2010 my life as I had known it --- changed. The big "C" word was introduced into our lives and throughout Jay boy's body. That first night was unlike any I had ever had before. The nightmares began when my head first hit the pillow and didn't stop until morning light. In my nightmare I saw again and again and again the doctor taking Jay away from me permanently. I was begging and pleading with the doctor to leave him with me but to no avail, he wouldn't listen. I knew I was having a nightmare so I began pushing and clawing my way to the surface of awake. If I could just wake up all would be well. When I finally emerged from my nightmare I had an intense flush of relief ... and then I realized in my awake moment ---this nightmare ---was my new reality.
On Friday, April 23, 2010 I knew I must be dreaming. It was as if it were a Norman Rockwell evening. If you didn't know better an onlooker would believe it was a staged movie. It was a carnival...a fund-raised...a life lifter....a life saver. The street had been blocked off to traffic so children and adults could amble from booth to booth. Each booth offering a magical delight whether it be hot dogs, homemade baked treats, ice cream, popcorn, a bounce house, a clown, an auction and lots and lots of dear, dear friends. Balloons floated in the gentle wind, smells of cooking food permeated the air, and the happiness of children with a little bit of freedom echoed in the breeze. Laughter, love, and joy was the rhythm of the evening. So much work by so many hands to lift our burden. So much money raised, so much love showered upon us, so much warmth given and received.

Thank you, thank you, thank you, one and all for the "evening of dreams". This is one I will linger in, reveal in, and sup from, for a very long time!


I love you all!!

4/21/2010

Windows of Heaven

I testify it is true that God can truly open the WINDOWS OF HEAVEN and the blessings that pour upon us are more than can be received. He has sent a congregation of angels to lift and attend us. YOU ARE OUR ANGELS!!


Every angel special and individual uniquely able to give us exactly what we need just at the time we need it. How you have lifted us! How you have healed us! How thankful we are for your love and strength. From the depths of my soul...I say...Thank you, I love you, and may you be filled with the same joy you have so completely filled us with!!


We met with Dr. Harzman yesterday morning and he wanted further testing. Jay underwent more lab work and a CT scan of his abdomen. GREAT NEWS ... Jay just has a small infection and it looks like it will be easy to remedy.

Jay's strength is coming back slowly but surely. He actually started sounding like Jay last night. IT WAS DELIGHTFUL!! Jay boy is almost back!! (Gooo Ute's and hello Eagles)


The earliest that we were going to be able to meet with the oncologist (Dr. Thomas) was going to be May 3 however, Dr. Harzman felt it was very important that we meet with him quicker so he pulled some strings and we now meet with him today (April 21, 2010) @ 5:30 p.m. At the end of this appointment we are hoping to have a better understanding of the cancer, as well as an outline of the plan for fighting it.


Thank you for all of your selfless sacrifices in our behalf...you have truly made a rocky road into a golden path!!


We love you all!!

Susan

04|19|2010

I choose life!


It occurred to me in a flashing inspiration that there's a time to cry and a time to live. While crying at this juncture in my life is a natural default I am quickly learning that it deprives me of the equal amount of LIVING moments. Crying comes because of what-- I MAY loose, from --POTENTIAL loneliness, from --POSSIBLE separation. But for all of the time my heart is focused on these possibilities I am missing the LIVING MOMENTS!!
NOW is the time to live. To REALLY LIVE. Eat, breath, sleep, LIFE. Now is the time to breath in my Jay boy. Now is the time to memorize his face. Now is the time to listen to the gently, rhythmic beat of his loving heart. Now is the time to allow his voice to echo in my ears. Now is the time be filled with his testimony. Now is the time to feel his lips against mine.
Now is NOT the time to cry. NOW is the time to LIVE!! I CHOOSE LIFE!!

Jay has struggled for the past couple of days. His energy has all but leaked out of him. He is unable to sleep and he is running a low grade fever. I spoke with the surgeon today and he directed us to the outpatient lab at OSU where blood was drawn and analyzed. We meet with Dr. Harzman tomorrow morning (Tuesday) at 7:15 a.m. for the results and for further directions. I am praying that Jay will simply need an antibiotic for a quick recovery from this first surgery.

I love you all. Thank you for your love, prayers, emails, and cards. You and your kindnesses have lifted our hearts!


Susan

04|13|2010

WE ARE HOME FROM THE HOSPITAL!!! WE ARE HOME HOSPITAL!!! WE ARE HOME HOSPITAL!!!  Kiss our driveway, kiss our sidewalk, kiss our hardwood floor, kiss our carpet, kiss each other, kiss our family, kiss our ward family, kiss our friends!!!!  Great thanks to God!! WE ARE HOME!!! 

 

We pulled into the driveway yesterday evening...what a glorious evening it was. Such gratitude for the warmth of our home, the warmth of our street, the warmth of our far reaching family ties!

 

The doctors are astounded at Jay's incredible recovery from his surgery.  We had hoped that he might come home today however, the doctor's thought it would be more like Wednesday or Thursday.  Unbelievably he was released on Monday. 

 

There is transitioning that is taking place with the colostomy.  We are learning and soon it will become just part of everyday living.  It sounds like Chemo will begin in approximately 2 weeks from now.  The doctors feel like Jay's body should be healthy enough to begin.  BUT FOR NOW...we are soooooo glad TO BE HOME!!

 

All of my love and gratitude!!!

 

Susan

April 11, 2010

Jay's first 24 hours post surgery were very difficult. However...onto better news!!! The next 24 hours his recovering has been fantastic. His strong body has aided him in this wonderfully short recovery time. He probably will be coming home Tuesday. It is amazing what a healthy lifestyle coupled with love/fasting/prayers will do for a person. Our understanding of this new life that we have just FALLEN into is still an unknown. We don't understand the circus that is swirling around us or the roller coaster that we have awaken on. We are still in the midst of making heads or tails of this whole situation. However, every day that passes we learn something new. Lessons that allow us to see more clearly of what our focus should be or lessons that teach us how to gain strength for this journey. These lessons come because of the DETAILS that God has applied to HIS great plan of happiness. He doesn't just care about us as a GROUP, he cares for us as individuals AND then he cares for the individuals in GREAT DETAIL!!! We are experiencing the DETAILS OF HIS LOVE! Little tender mercies from heaven fall like snow all around us. They are sparkling and glorious and provide a strong and constant reminder of God's love for us. In this HELL that we find ourselves in (because it TRULY STINKS!!!) Father has provided us with sweet pieces of HEAVEN, and they are absolutely delicious! Thank you, thank you, thank you! The emails, the posters, the love letters, the cards, the voice mails, your sweet kindnesses are SOOOOO appreciated. I print off the emails and take them to the hospital where I read them to Jay. We are both so touched and supported by your love and prayers. Your actions have made and are making a difference in our lives. May God bless you for your generosity of spirit in our behalf! We love you all, Susan

04|09|2010

How does one begin writing the unthinkable?  I guess just one baby step at a time.

Today was a very difficult day.  Jay was wheeled into surgery at 5:42 p.m.  They quickly discovered that the cancer HAD NOT spread to his bladder.  The urologist found us early on and updated us with this most incredible news!!! ELATION!!!

The hours ticked away until finally at 9:50 p.m. Dr. Harzman (the surgeon) met with us following the surgery and painted the picture.  The tumor was much larger than originally expected.  It measured approximately 4 inches in diameter. Due to the placement and the size of the tumor the doctor opted to do a colostomy.  The thing that we found the most unsettling was that upon inspection the doctor found many small tumors in the lining of Jay's abdomen.  Apparently the tumors found in the lungs and the liver have a much higher success rate with chemo than a tumor that isn't located in an organ.

The doctor said that Jay will remain in the hospital probably 5-7 days depending upon how well he heals.  We then will meet with the oncologist (Dr. Saab) who will create a treatment plan to fight the tumors.

Needless to say this has caused a heart to ache and a soul to weep.  AND YET, in the midst of the pain comes peace.  A knowledge that my sweetheart and I are sealed for all time and eternity. My Jay boy is my Jay boy forever!  My gratitude overfloweth!

Now...off I go for an incredible adventure with my sweetheart!!

I love all beyond words!

Susan

04|08|2010

I am sure many of you have already been made aware of Jay's updated medical information.  Some of you perhaps not...so I will try to lay out the facts through the blur of my tears.

Dr. Harzman called this morning to report on the CT scans Jay underwent yesterday.  Things don't look good.  The doctor reported that the CT scan showed that the cancer had spread to Jay's liver, lungs, and probably his bladder.  He will undergo the bowel surgery tomorrow due to the urgency of potential bowel blockage.  2-3 weeks following the surgery he will begin chemotherapy.  It sounds like at some point he will probably need to have his right lung removed and the right side of his liver.  His bladder is involved but we won't know to what extent until following his surgery.

Needless to say this is FAR more information than I can get my head and my heart around.  How profoundly grateful I am for your love and prayers in our behalf.  We have been encircled in your love and care!!!

Jay is always Jay (thanks the good lord!).  He is strong and solid always striving to lift those around him.  He has willingly and eagerly looked past his own pain to try to lift mine.  His eyes are upon his family and as always he is our ROCK!  He continually impresses me beyond words.  His desires are to be honorable and an instrument in the Lord's hands.  

God is in charge and is a loving, tender, long-suffering leader. He has showered us with blessings.  He holds us now and we feel his loving embrace.

Thank you for your prayers, emails and voice mails...they mean so much!

Susan

04|07|2010

Hello everyone,

Wednesday, April 7, 2010 update.  Jay and I meet with the surgeon (Dr. Harzman of the James Cancer Institute) expecting a consult and a surgery date for the following week to remove the cancerous portion of his colon.  We came out with a whole lot more!

The surgery is scheduled for Friday, April 9, 2010.  The start time will be between 1:00 and 5:00 p.m.  His recovery will take 5-7 days in the hospital and 4-5 weeks at home if there are no complications and if the cancer hasn't spread outside of the colon.

Surgery will consist of removal of a portion of the colon (approximately 6 inches in length) and the surrounding lymph nodes.  The colon will be immediately reconnected during the original surgery.  The lymph nodes will then be biopsied to determine if the cancer has spread.

Dr. Harzman and the Cancer Institute are INCREDIBLE!  Once they determined that surgery needed to take place Friday they had us moving through a well oiled machine for pre-op preparations.  We met with the Anesthesiologist, completed lab work, had an EKG, filled out surgical papers and consent, had an abdomen, pelvis, and chest CT scan, had the tumor tattooed (yes...now Jay has a tattoo...hmmm, will he need to meet with the bishop?) and had a consultation with the chief gastrointerologist at The James.  They were so efficient and so effective.  They made the journey sooo much more pleasant than we ever expected!!!

We should receive the results of the CT scan tomorrow.  The CT scan is for several different reasons.  First:  to determine if the cancer has spread to the liver, bladder, kidneys, lungs or pelvis, and Second: If they detect that the bladder is involved in this mess (via the CT scan) they will postpone the surgery because they will then need to consult a urologist and he/she will also need to be present during the surgery.

So with all this said there is only one day prior to the surgery (Thursday) that we can do a family fast.  In advance we would like to thank all who are so generous and willing to participate.  Thank you for your service, for your kindness, and for your generosity of spirit in our behalf!!!

We love you ALL!!!

Susan

04|06|2010

Hello everyone,

Just a quick update on my Jay boy.  We will be meeting with the surgeon at the James Cancer Institute tomorrow (Wednesday) @ 1:00.  We are hoping for logistics and specifics with regard to Jay's cancer and his pending surgery.  I will try to get that info out as soon as possible.

Needless to say "this is a VERY difficult thing"!  However as we were discussing faith and the miracles that it provides we quickly realized that we have been blessed with the biggest miracle of them all...We know that God lives and He is in charge.  He has proven himself again and again and again to us and now we are challenged to REMEMBER and to TRUST. God knows what he is doing!  Because of  this knowledge the sweet warmth of  PEACE and HOPE have enveloped us.

How blessed we are to have you all in our family and on our team.  We thank you all from the bottom of our hearts.

All of our love and gratitude,

Susan