Liver Don’t Fail Me Now!!!

Well, here we are a week later and I am still the guest blogger.

Since our last post Michelle spent the week looking forward to the surgery, hoping that it would bring her some relief from the pain and nausea. On Monday, she met with Dr. Jude and it was hoped that she would have back surgery within two weeks. They also discussed her headaches and he told her that he was concerned and would move the MRI to be completed before the back surgery.

On Tuesday Michelle got a call from the radiologist saying that they would complete a CT scan the following Monday (before beginning the next course of radiation treatments). Pain relief was on its way and Michelle was very excited that it was all going to happen so quickly.

As planned, I took her to the hospital bright and early on Thursday for the liver treatment.  She was feeling very sick but very happy to get the procedure completed so that it would bring her some relief. As soon as she got to the nurse, there was concern about her hydration. So she was given an IV fluids while waiting for surgery. Halfway through the hydration, Dr. Childers arrived to tell her that the surgery was not going to be possible.

Her bilirubin levels were too high. You might have heard that term if you have had a baby, because it is one of the first tests a baby is given to ensure the liver is functioning correctly. This is what they mean when they talk about a baby having jaundice. Elevated levels of bilirubin indicate that the liver is not functioning properly. In Michelle’s case this meant that the liver tumors were too large and we would need to find a way to reduce the masses in order for treatment to take place. Performing the procedure would be too dangerous and could cause more issues that would not help her liver.

Dr. Drengler was contacted and determined that we would need to meet again soon to discuss options. Michelle only had a planned hydration treatment planned for Friday, so Dr. Drengler agreed to meet with her outside of his clinic hours. Later that afternoon, Nurse Cindy from the treatment room called to let Michelle know that she was welcome to come in for hydration at any time of the day, which made it much easier for Michelle to come in first thing in the morning.

Mom took Michelle to the appointment and planned for her stay in the parking lot. However, Nurse Monica asked if she had been vaccinated and allowed her to come in to the appointment. Dr. Drengler said that he was very upset that the procedure could not happen the day before, but it got him to thinking of other approaches to reduce the tumors. He told Michelle that he was already working with the insurance to change the chemotherapy. He will be checking in with our insurance every day, and the day that he gets approval I will start my new treatment. Due to the bilirubin issue the back surgery has also been postponed and we will decide on Monday about the radiation treatments for her ribs.

Of course Michelle is very disappointed that her pain and nausea will continue through this waiting period. But she is very grateful for all her friends and family that are supporting her through this time. Through all this, Michelle remains confident in God’s love and protection in her life. 

Last night during family prayers, Michelle was reading from Psalm 49: “For no man can buy his own ransom, or pay a price to God for his life. The ransom of his soul is beyond him. He cannot buy life without end, nor avoid coming to the grave.” We then read from 1 Peter: “Jesus was known before the foundation of the world but revealed in the final time for you, who through him believe in God who raised Him from the dead and gave Him glory, so that your faith and hope are in God.” 

May God bless you all abundantly!

-Michael

Well This is a First

 I am not normally a blogger, but Michelle gave me permission to write this because she is unable to focus on the computer. Since she last posted things have progressively gotten worse, especially her nausea and pain. Last weekend was very rough, and by Tuesday Michelle felt dehydrated enough to go into the clinic for hydrations. While she was there, she spoke with Dr. Drengler and he let her know that the MRI had found more lesions on her spine. On Wednesday Michelle met with Dr. Zubyk.  The doctor brought her all the way to her office just to tell her that she did not know what to do for Michelle. Dr. Zubyk is concerned that the areas affected have already been radiated and that additional treatments would be too much. 

On Thursday, Michelle went back into the clinic for hydration, she got there early enough that she was there before they started clinic. She asked to see Dr. Drengler’s nurse to discuss what Dr. Zubyk had told her. After hydration, Michelle came back home.  That afternoon, Dr. Zubyk called back to let Michelle know that she would schedule 10 sessions of treatment to radiate the spots on her ribs. After that is when Dr. Childers called to discuss the treatment for her liver. Because the last embolization procedure used radiation, simply repeating the procedure would be an over-exposure. This time, the beads they use will be treated with chemo. Dr. Childers was able to set up this procedure quickly, it will be done next Thursday. Hopefully, this will help relieve Michelle of discomfort. After she got off the phone with Dr. Childers, Dr. Jude called to set up a tele-med appointment for Monday to discuss her spinal surgery.

The worst part of all this is that Michelle has been in a lot of pain, and the pain is making her nauseous. So, she has not been able to eat very much. She has previously able to control the pain with regular Tylenol and Alleve, but over the last few days she has had to use the Tylenol 4 and Vicodin. We are hoping that the surgeries on her back and liver will help to relieve her of the pain. This is why Dr. Drengler is so amazing. He had to have called all of those other doctors to get them moving so quickly. We have been very blessed that he took on Michelle’s case.

My sister Sherry also called with a book that discusses a homeopathic treatment that has helped others living with cancer. Maybe it is a cure, maybe not, but it won’t hurt to look at it.

For Michelle the hardest thing in all of this is that she has been teaching a class for the Diocese, and there were two more sessions (the next two Saturdays) but she had to call and cancel. On the plus side, she will get to rest this weekend. She has also had to cancel a trip to Kansas and Colorado that she and a friend have been planning for over a year. That might be all for the best, as some of the mountain roads that they would be travelling are still closed due to snow.

The children have been helping out, getting things for Michelle, and doing her chores for her. We are all praying that we will be open to God’s will and that He will continue to protect us.

We are all very grateful for all the people that have been bringing meals for us. Michelle has been too sick to make a grocery list, much less to go to the store. All of those meals have been a blessing, and we thank God for all of the those that are helping us.

God bless you all! He hears your prayers, so keep ‘em coming!

No News is Not Always Good News

Sorry, folks!  I have had a long week of second guessing everything!  I have also spent most of my week being sick from one end or the other...I know, lovely thought!  Mainly, I have been resting in between doctor visits and scans. I am still going to one more set of scans tomorrow. 

Dr. Drengler did not have any new information for me on Monday. I continued with my second round of immunotherapy and my Zometa (bone strengthening medication) infusions. He determined a full bone scan was needed to determine the pain I was having in my right side. He could not see any reason for the pain from the previous scans. 

So off to the scan room again on Wednesday. No problems with that scan as I was able to go to my favorite location with the newest technology and great staff. I even had time in between contrast injection and scan to enjoy the cooler weather. Granted it was done while sitting in the parking lot because even small trips in the vehicle causes my nausea to increase out of control. I used the time to study my class notes for my upcoming class on liturgy. Yeah... I am a little crazy but I love teaching the faith and look forward to teaching this class. I just pray my nausea does not cause me issues this Saturday morning. 

Today, I heard back from Dr. Drengler that the bone scan showed new areas of bone lesions. I now have cancer in my ribs on both sides. I also have cancer in my right hip and two new areas on the left side of my neck. I think I have now covered all the bones in my upper body and a few spots in the lower areas too. What fun this cancer is having!!!  

I will now have more radiation treatments scheduled for the near future. I am sure it will take more meetings with doctors and authorization from insurance. It will take a few days to organize this plan. I also am waiting to hear back from radiologist for my liver treatment. I am not sure when this will happen. 

Tomorrow I will have a new MRI of my spine. I think Dr. Drengler is concerned that the cancer is still an issue in my spine and spinal fluid. I will find out these results on Monday. After the MRI, I am supposed to race over in time for a hydration boost in hopes it relieves some of the nausea and diarrhea. 

I will tell you... I am tired. The weariness is getting to me and not having the ability to get up  and do things. I know the best option is to let my body rest but it is not in my nature. 

Please pray for me to be patient with my body. Pray for healing.  

Fr. Martin was so kind and anointed me on Tuesday when I went to Mass. Such a blessing!  He also told me that we should focus on one person who is thought to be a saint in need of a miracle attributed to their cause for canonization. So our family sat down and read about several options. We choice to ask Ruth Pakaluk to intercede in my behalf for complete healing of my cancer. Just a quick click on her name will take you to an information page and an intercessory prayer. I hope you will join our family in prayer for this cause. 

God bless you all!!!  

A Day with the Horses

Today I was really not feeling well, but it was not about me today. It was all about Zaira living the dream that all little girls seem to enjoy!  She was going to get to ride a horse today!  She had been counting down the days for over a month and the day had finally arrived!  She was so excited she even  slept in her boots the night before!  

I was determined to be there for this special day. So we got into the car and took the 60-minute drive to the horse ranch. Thankfully, after breathing in the fresh country’s economy  air, I was able to enjoy the giggles and ear-to-ear grins throughout the morning lessons. 

Little Miss was so happy to learn about horses and the equipment. Then it was on to grooming the horse to prep for the ride. I think she would have done just about anything to ride that horse!  She was paired with a sweet horse named Riley. A teen assistant helped make sure Little Miss was learning all the skills to care for a horse. 

Then they put the bareback padding on Riley along with the bridle. The director came to check on all the riders. When asked if Little Miss had put in the equipment by herself the teen said no.  All of it had to come back off for Little Miss to do by herself. I was glad to see this because when we worked with horse therapy in the past, this was always the rule. Little Miss had learned quickly and had no problem with the task. 


Little Miss was leading Riley out of the stall in no time. She was so eager to hop on Riley and take a ride. Slow down missy!  All the girls were doing this together!  So Little Miss had to wait for everyone to be ready. 

It did not take long to have them up on their horses and ready to try the first round with their hands on the horn led by their assistant. You could tell Little Miss was getting impatient because as soon as the leader asked if they were ready, her hands were up in the air and ready to take the bridle!  

She did a great job leading Riley through the obstacles!  Of course, the time went by too quickly. She was convinced the leader invited them back the next day. It turned the older girls in the troop were camping that night and had a planned trail ride the next morning. Oh how disappointing for our Little Miss!  

I promised to look for a place more local and see if she could go more often. I am so glad it was fun for her. A beautiful day and beautiful memories!  

Somehow We Start Back at the Beginning

If you have been reading my updates, you all know that I try to praise my medical professionals as much as possible. However, I was very disappointed in the medical staff over the last three weeks. 

As many could tell from my last post, things were not going well the last few weeks. I tried to get help and became frustrated with the lack of understanding from medical staff who did not know me and were not listening. They spent a lot of time minimizing the issue or coming up with reasons for my pain that were not accurate. Mainly their solution was to push stronger pain medication and antibiotics, neither of which were needed (I did not have an infection according to blood work).  I tried to explain where my pain was located, but the NP insisted the pain was radiating from my back which was just a side effect from my recent radiation. When I told her that I knew the difference between back pain and kidney pain, she ignored me. I am convinced she wrote in my chart that I had back pain. 

When I called back on Monday (April 5), I was once again speaking to a secondary nurse. She asked if I had taken pain medication. I told her I finally started taking Tylenol 4 for pain on Saturday. She asked where I had gotten Tylenol 4...what?...Dr Drengler had prescribed it to me last June!!  I only take as needed so I had some and it seemed to help for short periods of time. Since she acted as if I was abusing pain medication or obtaining medicine from an unknown source, I was surprised by her next response. Why didn’t I take the stronger pain medication prescribed to me?   I told her I really did not want to cover up the pain without knowing what was causing it. So she told me she would speak to Dr. Drengler and get back with me. Several hours later, she called to tell me I would be scheduled for an MRI later in the week. 

So when I had not heard back by Wednesday, I called again. Lo and behold!!...I got Monica on the phone!!!  She told me that she did not even know about the MRI and I would need to talk to scheduling. I was transferred and was told that all was in place for the next day for an MRI of my lower spine. Nope...nope...nope!!!  That is when I knew the correct information was not getting to Dr. Drengler.  I asked to be transferred back to Monica because the wrong scan was being ordered. After a talk with Monica, I waited for a response. I was then directed to come in the next day for a CT scan of my abdominal and pelvic area. 

This scan was completed Thursday with no difficulties and I would have the results back in time for my scheduled appointment on April 12. 

However, I got a surprise phone call from Dr. Drengler early afternoon on Friday. As much as I was glad to hear his voice, I knew he could only be calling with bad news. The basic information I have now is that there are new masses in my liver. There is also cancer spread in other areas. The option to repeat the treatment I had last summer is not going to be available in fear that adding more radiation to my body would risk shutting down my organs. We are now looking into chemo-infused embolization. We will continue with the immunotherapy for now. We will discuss future plans in more detail at the Monday appointment. 

I was given a new prescription for the Tylenol 4. I am taking it more frequently and trying to rest this weekend. God continues to show us the way, even if we do not understand which direction the tracks of this ride will take me. Please continue to pray!!  I am so blessed to have you all with me.  

An Amazing Holy Week

Many have asked how I am doing and I wish I could say everything has been wonderful. However, the last two weeks have been a little rough. I tried to focus on the joy of Holy Week, and I offered my suffering to unite with Christ’s Passion. But I must say it was a difficult road to travel. I spoke about this with my Bible Study class the week before Holy Week. Jesus led the way into Jerusalem, so his disciples would be able to follow, but even Jesus said it would not be easy to accept the cup that he would drink. So I spent many an hour resting and trying to work through the pain. I know that Jesus was right there by my side helping me get up when I had fallen. 

The area of pain the first week was recouping from the brain surgery. I felt like my head was in a vice and the feeling I was bruised all around my head. I tried to think of the pain that Christ felt with his crown of thorns. My pain was minor compared to his unjust treatment.  (Matthew 27:29)

I was also having severe pain in my kidney area to the left of my back. This pain would shift to my right side during the week of Holy Week. It reminded me of the pain I was having just one year ago during Holy Week. I could not help but be concerned.  I tried talking to the doctor but he was out of town and I was left with a NP that we know does not truly listen to my concerns (sad to say).  It made me think about how Pilate, although hearing Jesus, felt that he had to listen to the voice of other louder voices in the crowd who wanted to condemn Jesus.  Pilate thought he could have Jesus scourged as well as other cruelties performed by the Roman soldiers.  (John 19:1-6)

This back pain continued throughout Holy Week, but added to this pain on Good Friday I began to feel a shooting pain from my neck that radiated across my right shoulder (in the past this pain has always been on my left side).  I am sure it was related to the arthritis in my neck from the past radiation treatments.  I could just see myself with Jesus carrying the cross up the hill to Calvary.  How he must have felt the terrible agony of the weight of our sins on his shoulders! (Luke 23:26-32)  I know that my pain was just a small glimpse of what he was feeling, but the pain continued and grew worse as the weekend moved forward.  I did not even have the relief on Easter Sunday.  So, Saturday night I decided I would take my stronger pain medication.  

Through all of this, I thought about Jesus.  However, I also thought of all the saints who had been blessed with the sufferings of Christ through the stigmata (Never heard of this?  Here is a site that explains.).  I now know that I am as close as I would like to be to that pain and suffering.  I feel like the saints who were blessed with the stigmata have been given a special grace to live with this attachment to the Passion.  I profound respect for those who received this gift.  

So in spite of this pain, I did find joy in the day leading up to Easter.  I had such a wonderful support system of family and friends.  I also saw the love my children have to serve the Church, which I think is beautiful.  Edward and Sean helped Fr. Martin build a 12-foot tall gazebo to "house" our new altar on the property.  Brendan served as an altar server at all the Masses of the Triduum and Easter!  Zaira helped as much as she could and just showed so much joy throughout the week! 

Added to this, my big brother (Adrian) came to visit us on Wednesday-Thursday.  He brought me a belated birthday gift that he and Kasey picked out for me on their recent trip to New Mexico.  He found out on a previous trip that I had always wanted a turquoise ring, so they found me a beautiful one!  I will wear all the time...I love it!  

He was also visiting at just the right time to join us for our family Seder meal (we recorded for others to watch)!  He was so kind to take the lead part (I usually do this but it was nice to have the reprieve this year.) Right before we began the Seder, a dear friend (Sandy Salinas) arrived to give me a special gift of flowers, which was perfect to add to our table for the prayerful meal!

Then Henry surprised us with a visit for the weekend!  He had just been home the week before, so I am so glad he made it back to be with us to celebrate Easter.  He even took the crew to Sea World the afternoon of Easter Sunday!

The Easter Triduum was so amazing at our parish site!  So many amazing people came together to make our first Easter special.  I am so glad we can be a part of this small group who love the Lord so much and want to work together.  

On Holy Thursday, we gathered at our new altar location under the gazebo.  Father Martin washed the feet of a few parishioners and our Little Miss was chosen to be shown her servant heart.  This Mass does not end but continues with quiet adoration of the Lord.  This is to represent Jesus taking the Apostles to the Garden of Gethsemane and asking them to pray.  "So you could not keep watch with me for one hour? Watch and pray that you may not undergo the test. The spirit is willing, but the flesh is weak."  (Matthew 26:36-68)

On Good Friday, we met with other families of the parish to pray the Stations of the Cross with the children.  Our wonderful Monica, made it so special for the children (and adults) to reflect on the Passion of Christ.  We returned later to share in the Veneration of the Cross.  Father Martin had a magnificent crucifix donated to our parish at just the right time for this adoration.  God is so good to bless our little parish in this way!  

On Holy Saturday, we went to help Father Martin and others set up for the Easter Vigil Mass.  We went home and made special Easter bread, along with a Easter basket of food for Father.  We wanted to share this tradition with Father, Deacon and Monica & Socorra.  We returned just as the sun was setting for the Mass.  Father had a large bonfire to light our first parish Easter Candle.  This candle is then used to light our individual candles to represent that we spread the Light of the World...JESUS...by fulfilling our baptismal promises.  The story of Salvation is shared throughout the Mass, as we are first in darkness and then come to the light!  At this Mass, we also shared with several adults and older children the joy of them being baptized, confirmed and receive the Eucharist.  This is such a beautiful Mass!  Michael was not able to attend with us because he was a sponsor for friend who was entering into the Church (along with his wife and two daughters) at a different parish!  It was a very full and spirit-filled evening that went late into the night!

On Easter Sunday, we enjoyed an early morning Mass.  I love the Easter morning Mass, which is so full of joy in knowing Christ is risen!  Alleluia!  The older boys helped Monica set up an egg hunt for the parish children.  They hid over 500 eggs along a small "road" on the parish site.  It was so much fun to watch the children hunt for the eggs!  We enjoyed a simple Easter dinner before they headed out for Sea World!  Henry stayed an extra night so they would not be rushed at the park.  

I already know what you are all are thinking...you did too much!!  I assure you...I am really good and delegating!!!  AND...my family had to learn some new things this year...it was actually nice to see them taking on the role to make this Easter special!  I truly was in pain and we would not have had these joys without Michael and the children doing what I have done in the past.  Praise God it all came together!!!

AND...I know you are all wondering if I ever got the doctor or nurse to find out why I was having issues.  Long story short...it was a mess with only secondary staff available during those two weeks.  However, I finally got through to Dr. Drengler and he ordered a new scan to determine what was happening.  More on this as it comes about this week.  

Pray for me!  I am taking pain medication as we work to find out what is going on with my body.!!