Back Home

Yesterday, June 23, was a great day.  I was released from the hospital in the evening.  I am so happy to be home.  The nurses were good to me, but it is wonderful to be in one’s own home and one’s own bed.  It is a bit more challenging to keep up with the various medications, but Steve and I seem to be able to do it.

The only additional procedure they performed at the hospital before I checked out was a tapping of my abdomen to remove fluid.  It was not quite as successful as Monday’s procedure in which they removed the fluid around my lungs.   They only recovered 650 ml of fluid from my abdomen.   The procedure was very painful at the time, but it has provided some relief.  However, I still have edema over the lower part of my body.

I am now working to rebuild my health and strength so I can begin chemo as soon as possible.  It is likely that chemo will not begin until later next week.  We meet with the oncologist on Tuesday, June 30.  I have begun working with a nutritionist this week to try to build up my strength.

I really appreciate my family.  It has been fabulous to have Troy, with his daughter, and Lee and Stephanie, with their 4 children, at our house.  Brock and Stacey have had a lot of fun with the kids.  Brock also has cooked some fabulous meals.  We look forward to Justin coming later this week.

A special treat today was a visit from my brother, Ron.  He lives in Indonesia, and was travelling in the US for his work.  I am so happy he took the time to come to visit me.  I especially enjoyed when he shared the stories from the book he is writing about his childhood.  He mentioned several of the stories that related to me.

I really appreciate the support of our family and friends.  

Further Complications

My experience so far dealing with cancer has been filled with complications.  After the ICU incident last week, I was moved to a regular hospital room on Friday, with the hope of maybe being released to go home on Saturday.  However, on Saturday, the doctors started to notice some fluid in the lung area.  By Sunday, I was retaining a substantial amount of fluid.  For example, my weight had increased from the 103 pounds when I entered the hospital to over 120 pounds.  Everywhere from my chest down to the bottom of my legs was swollen.  My abdomen was tight as a drum, causing me severe pain.  Also, due to the fluids in and around my lungs, I found it more difficult to breathe.  This made it more difficult to sleep as well.  Overall, it was not an easy weekend in the hospital.

On Sunday, the pulmonary specialist confirmed that I have pneumonia.  I continue to be on antibiotics, and this morning, they tapped the area around my lungs.  They removed 1280 ml of fluid.  This procedure was extremely painful.  They began the procedure, but as they inserted the needles and removed the fluid it really started to hurt.  They stopped the procedure for a few minutes to let me rest.  I felt so lonely at that time as I was not allowed to have others in the room.  I was crying.  As I started to pray, I received comfort from Heavenly Father strengthening me through the remainder of the procedure.  Fortunately, removal of the fluid has reduced my pain, and I have been able to sleep much of the afternoon, as I was not able to sleep last night.  

Unfortunately, these complications will delay the chemotherapy.  It will probably be next week before I can begin those treatments.  We remain concerned that other complications will arise.

Overall, last week was very difficult.  The pain and suffering were severe.  It has also been emotionally challenging facing continuing treatment delays.  Staying in a hospital is no fun!  Sleep is difficult, doctors’ visits are frequent, and the beds are uncomfortable to say the least.

Yet, we continue to receive tender mercies from God.  For example, last night as Steve and I were in the middle of our individual prayers, a call came from Ned Warner, a nephew-in-law who is a GI doctor in Idaho.  Steve did not recognize the number and almost did not answer the phone.  When we talked to Ned, I mentioned that I had been praying of how I am disappointed that I am not able to give service.  For an unknown reason during that thought, Ned and his family had come to my mind before receiving Ned’s call.   Ned had not called us before regarding my recent cancer diagnosis.  It was, in essence, God saying I know you are there even if I am allowing you to have some very difficult experiences.  I cling to that hope.   Although, I would much prefer the miracle that cured me, I am grateful that God is aware of my suffering.

Another good part of last weekend was the arrival of some of our children and all of our grandchildren.  This has lifted my spirits.  They have also provided a great support to Steve.  One special example, my granddaughter, Madelyne, made me a DVD of her playing the piano while singing many of my favorite Church songs.  As a lead in, they included the song  “His Hands”.  They also included some of my favorite pictures of the Savior as the song was playing.  This is one of my favorite songs.  I cried as I listened and the spirit was strong.  I felt His Hands were serving me through others’ kind actions including the medical treatments that I have received. The grandkids also sat down one afternoon, unprompted, and made get well cards for me. I'm proud to have such thoughtful grandchildren.

I have also been grateful for the many flowers and other goodies that have been sent by friends.
It's so humbling to have the support of so many great friends.

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.