A Setback.

This week has not turned out as planned.  I have spent nearly all week in the hospital, with today, June 18, spent in the ICU.  I am recovering tonight in the ICU after having a ventilator on for most of the day.  The doctors believe the primary cause of today’s incident was aspiration.  As I have been experiencing severe headaches, they also took an MRI of my brain.   The MRI did not identify any tumors.  I will stay in the ICU tonight for observation.  Overall, a very scary and difficult day.   The ventilator down my throat really hurt my throat.  Although not claustrophobic, I found it very difficult with my throat blocked.  When I could not talk, I would write notes to describe my pain and to identify what I needed. I appreciate Steve being at my side, holding my hand.  Also, it was so wonderful that my sisters, Tammy and Yvonne, were here as they rubbed my feet and back.  When I saw them around my bed, I felt that there were angels present, including my Mom and Dad.  It was feeling of comfort and peace.  At this time, I am glad I can talk again, even though my voice is very quiet now.

 Now back to the beginning of the week, and why I have been in the hospital.  On Monday, June 15, I began to feel quite ill, with a lot of nausea and headaches.  I vomited several times during the day and could not hold down any food, but still planned to have the two procedures (port installation) and ERCP (bile duct stent installation) on Tuesday.  As I quit eating after midnight in anticipation of the procedures, I became even more ill.  At 4 am, the pain was so severe that Steve took me to the emergency room at Fair Oaks Hospital.  They gave me an I.V., a variety of nausea medication and pain medicine.

At 10 am I was admitted to the hospital, to prepare for such procedures.  Unfortunately, when I went for the port installation, I began to cough extensively so the doctors decided to defer the installation of the port until Wednesday, when I could be administered a general anesthesia.  What was so frustrating was that I had not really been coughing before going to the procedure.  I was very disappointed, as I needed to have the port installed.

At 2 pm, I was taken to pre-op for the stent installation.  Unfortunately, they were very busy so the procedure was delayed 2 hours.  I was exhausted.  The procedure went very well in the respect of the stent installation.  According to the doctor, when he installed the stent, he could immediately see the bile move from the liver, gall bladder and pancreas.  He found that the blockage of the bile duct was caused by a single tumor.  The tumor was sent to pathologists for analysis.  Unfortunately, they found the tumor to be malignant (adenocarcinoma).  It is expected that the  treatment plan will remain the same.  I will begin with chemotherapy as soon as I am well enough to stand the treatment.

Tuesday night, I stayed in the hospital.  The port was installed on Wednesday afternoon.  This should be helpful, as they have struggled finding adequate locations for IVs.  I also had a CT-scan and X-ray on Wednesday evening.  They are investigating my lungs. 

In spite of the difficult week, it has been very helpful to have two of my sisters, Yvonne and Tammy, visit me from Utah.  They have been great help and so much fun.  Also, my brother, Tom, and Deana, his girlfriend, visited me.   We reminisced about growing up together.  We mentioned great learning from, and fun times with, our parents.  We shared stories of our deceased parents serving us now as guardian angels.   Yvonne also shared with me a letter that I had sent to my Mom and Dad more than 30 years ago.  I had expressed my great love for them, especially in light of my rearing of my own children.  My parents gave me great love when I was a child, and I still feel their love and presence near me.  They were always a wonderful, powerful example to me; it has been great to share time with my family.

This week reminded me of the challenges that I face.  It will require me to be patient and to persevere.  Again, I recognize and appreciate all those who help and support me.

A Stent and the Beginning of Chemo

On June 5, I had another CT scan.  The scan identified a blocked bile duct.  The doctors cannot determine what is causing the obstruction – tumors or some other blockage.  The current plan is to insert a stent to open the bile duct at the same time when they are installing my port for the chemotherapy.  This will be done on Tuesday, June 16.  I will then begin chemo on Thursday, June 18.

A little background on how these events came to pass.  When I first heard about the bile duct blockage, I suggested that the procedure be done at the same time as the port installation.  The gastroenterologist said that was not possible, as the procedures were performed at two different hospitals by different surgeons.  We were referred to the gastroenterologist who specializes in this surgery.  When we met him, he said he had studied my information, and he had concluded that the two procedures should be combined.   I smiled at Steve with an “I told you so.”  This doctor, however, had to convince the oncologist, and work the logistics, to have a common hospital location.  Miraculously, that all occurred on Friday afternoon, June 12.  I had personally prayed that the oncologist’s heart would be softened so he would agree to all of these changes.  This is another example of Heavenly Father’s tender mercies for me.

Since the recent cancer diagnosis, I have had two Priesthood blessings in addition to the numerous Priesthood blessings Steve has given me.  One was from my home teacher, John Doolittle, and the other was from Nelson Burton, our friend and kind medical advisor (retired heart surgeon).  Both blessings provided wonderful comfort and peace.  They both blessed me to receive strength during the various procedures and treatments, with a special emphasis on this week’s procedures.  I felt an overwhelming love and peace from these blessings.   President Scott Wheatley, our Stake President and good friend, also gave a Priesthood blessing to Steve.    Both Steve and I feel very grateful for the strength of Priesthood blessings in our lives.

June 2015 Update

I am sorry to begin writing in my blog again.  I had stopped when things had gone well after my esophagus surgery a year ago in January 2014.  Unfortunately, my esophageal cancer has returned.  Based on a biopsy performed in May, the doctors found the same esophageal cancer in my liver.

To catch everyone up, after my surgery in January 2014, I gradually made good progress in my recovery.  Although, it required adjusting to a new life style of eating less and more frequently, I was able to regain my strength.  In fact, on July 4, I ran a 5 K race in Culpepper, Virginia with my family.  It was challenging for me because I have shortness of breath, but it was fun.  Although, I did not run as fast as I did before my surgery, I was able to run pretty well.  At the end of September, Steve and I travelled to Ireland and Amsterdam.  Steve had business meetings in Amsterdam, and we were able to spend 4 days with our son, Justin, in Cork, Ireland.  We were also able to visit Eoghan and his parents at their home.  We had a wonderful trip, and I felt pretty well. 

In February 2015, during my regular physical check ups, my internal medicine doctor noticed slightly elevated liver enzymes, but overall I was feeling well at that time.  In fact, our family had signed up, and had begun training, for the Salt Lake City half marathon in April.   As a precaution, the oncologist had me get a CT-Scan and a PET scan.  These did not identify any tumors.  From March to April, my liver levels continued to elevate, and I began not to feel as well.  I was tested for every possible liver ailment, but none was identified.  Also, an MRI did not identify any tumors.  In May, the doctors sent me for a biopsy of my liver, which found the same esophageal cancer.   Steve and I, as well as the doctors, were very surprised with this finding in light of the prior scans.  I was very disappointed, as I had been trying hard to take good care my body.  The doctors have said they cannot explain why I got esophageal cancer based on my life style.  They just say I got the rotten end of the deal.

We are now back dealing extensively with the oncologists.  We have been referred to a new oncologist, who specializes in gastrointestinal cancers.  I will begin chemotherapy next week.  I recognize that I need to receive the chemo; however, I have always been concerned about the side effects.  I appreciate having good medical care, as well as wonderful family and friend support in this treatment.

Currently, I don’t feel well most days.  My whole body aches.   I often feel nauseated and experience headaches and severe back and abdominal pains.  I stay busy with daily activity, especially attending many doctors’ appointments and the other daily activities.  It has been good to stay busy.  Also, I still try to do some activities that are enjoyable.  For example, last Saturday, Steve and I rode bicycles for 14 miles, and I still try to run/walk a few days a week.

I recognize that there are many people affected by my cancer.  I am grateful for Steve, my dear sweet husband.  He is a rock.  It has been great that he has been able to attend all the doctors’ appointments, and help research the best plan forward.  My children are the best cheerleaders and provide so much support to me.  It must be so hard on them.  My extended family members are such a comfort to me.  I have a close family of 10 siblings, and we love and care for each other.  I am especially close to my sisters who mean so much to me.  Steve’s family is also a great support.  I also have relied on my friends, including great church member support.

I have had so many spiritual experiences and so much comfort and peace during my entire time with my cancer.  I am so thankful for the knowledge I have that Heavenly Father lives.  I know beyond a shadow of a doubt he lives and loves me and knows me personally.  I have felt angels by my side.  One particular time was 1 ½ months ago when I was getting an MRI.   I had to be still on the table for 1-½ hours while the test was being given.  The nurse would come in to check on me and see how I was doing.  One time she came in and said, “Oh are you in a lot of pain” as she saw tears in my eyes.  I said no and asked her if she believed in God and proceeded to tell her that I had just felt angels around me.  They were near me, and it was as if they were trying to fix the problem.  She wiped the tears from my eyes, as I could not move. I know I am being blessed to be able to handle whatever it is that is ahead of me.  I will continue be a fighter and press on.

I want to say again I really appreciate the love and support of our family and friends.  We have received strength from your prayers and fasting on my behalf, especially the family and Church fast this past Sunday.  Thanks so much for your kindness and love.

I plan to update the blog periodically, as sometimes I don’t feel well enough to talk with each of you.

Long Time No Chat

It has been awhile since I have written anything on my blog, as there has not been any major news.  I continue to heal from my surgery.  I am not having any problems swallowing and there have been no leaks where my stomach now connects to my esophagus in my neck.

However, I am finding the recovery challenging.  With all these internal changes, I am trying to adjust to a short esophagus and small stomach.  I am not able to eat or drink very much.  I constantly have acid reflux and nausea.  I am still trying to figure out what to eat.  I am very low on energy.  I have gone back to the gastroenterologist.  I also visited a natural doctor and dietician.   We are still trying to find the right food that is both nutritious and reasonably good tasting.  I have not been able to eat the high calorie foods as they cause diarrhea. I am losing some weight, which makes me concerned.

I am still walking most days, even though I don’t have much energy.  I usually enjoy walking 3-4 miles a day.  I walk from our Penderbrook townhouse to our new house that is being built.  I hope eventually to get back to running, but it will be awhile.  I am reminded of where I was before the cancer diagnosis, as described below.

Last year on November 2, 2013, I felt so good about my marathon training.  I had run my 20-mile workout for the day and felt good about the upcoming race on November 16, 2013.  I had trained hard.  Troy, Steve, Stacey had also all trained hard.  We were all ready and excited for the race that we had worked so hard for.  Unfortunately when I got the cancer diagnosis on November 11, I was not able to run the marathon: however,  I was able to run the last 8 miles with them.

But as I reflect back on my life now, the marathon race preparation was preparing me to be able to handle what would be the next year of my life.  It took a lot of hard work and determination to prepare for the race and now I am able to have this same determination as I recover from my esophagus surgery. 

Port is Out

I got my port out this morning.  I was supposed to have it removed Monday but had to reschedule because of the snow.  I was so anxious because I've just had so much done.  This was the last thing I was having removed and I was so excited to be done but scared something would go wrong.  The doctors were all really understanding and I did really well.  I told the doctors I was cold and they gave me a bunch of warm blankets to wrap up in.

I'm still trying to figure out what to eat.  I have low energy a lot and my system is still learning to tolerate more complex foods.  After my procedure today I was given a sandwich with MAYONNAISE!  At first I thought the doctor was joking with me in offering it.  He was serious and it was delicious.

My procedure this morning did require anesthesia so I am just resting at home today.  I am not feeling very well and the wound on my chest where they removed the port is very sore.  I look forward to feeling better in the coming days.

I love walking to our new home that is in the process of being built.  I loved walking on Monday when it was snowing/  It was very cold but it was a fun walk.

I am touched by all the offers to bring meals and the sweet thoughts in your letters and comments on this blog.  Thank you for your thoughtfulness in sending gifts.