Lonnie’s Cancer Journey Part 1
This is the beginning of a life changing journey. It is my hope it will help people in there own life journey. As new articles are written they will be posted for your reading.
The Journey begins:
Looking back over time and understanding how this cancer in the jaw began. In September of 2012 I began having a pain in my right jaw and ear. In October of that year I went to the doctor and was told that it was probably a problem with a tooth and should go to a dentist. I was able to see a dentist in January of 2013 and at that time was told it was a bad infection and an oral surgeon should check it out. He gave me a cost estimate and at that time was out of range with dental insurance.
As time went and used Tylenol and alt water mouth rinse to ease the pain. Finally in June I went to Community Dental where a decision was made to pull the tooth however no treatment was given to the infection on the jaw and check. After returning to their office several times over the ensuing few months medication was given but no effect on the jaw problem.
Finally it ended up with being in the emergency room in the hospital with the finding of type 2 diabetes once an infection in the jaw itself. Given medicine for the infection found some relief but did not have a great effect.
Working hard I began to control the diabetes with exercise, diet and medicine. After month 2 I no longer had to use insulin shots only needed to take oral medication.
The problem with the jaw continued until I finally was able to see the original dentist after dealing with Humana and those problems of referrals from Primary care physician. The dentist could at best take an ex-ray because I could not open my mouth very wide and had been using mainly hot cereal and soup for food.
He referred me to Dr. Traut an oral surgeon who also had difficulty with opening my mouth and he gave me medication for infection and pain. By this time the pain was almost unbearable. After 5 weeks he decided that it was something more than an infection and suspected a tumor and made an arrangement to be seen by Dr. Spafford and Ear, Nose, Throat Specialist. The first visit was the one that finally found out what the real problem was. Dr. Spafford took biopsy and was very helpful in finding the root of the problem and beginning a treatment plan.
Monday morning at the doctor’s office was a mixed time of feelings. When he finished the exam he says that it is cancerous and that the jaw is in stage 4 cancer. First a feeling of relief to know what it was but scary in hearing the word cancer and stage 4. Being told that it will take a major oral surgery to begin the treatment was scary. While I tried to stay calm while he explained what was going to happen, my heart and mind were feeling fear, anger, confusion and wonder. It was a time of knowing that my attitude was going to make a difference but at the same time asking God why, what was this for, Why Why but no answers.
Watching the calmness of my daughter and her positive reaction that this was something we could beat helped me to look inside and make up my mind that with God’s help we could make it through Calling and talking to Bernadette my youngest daughter and telling her it was cancer was hard and caused much pain in my heart.
Once home and by myself many thought went through my min. The fear of the word began subsiding and began thinking of what it would take to get myself back into a positive state of mind,. I began counting my blessings that I had in my life. I began to remember to be thankful for the good things that have happened and were yet to come. I was thankful for the opportunity to take another life check. I began by remembering that I almost died when I had congestive heart failure and yet focused after the diagnosis and started doing what the doctors said until it was under control. It gave me a chance to get back in shape and learn to eat the right foods again. The second time I almost died was when I ended up in the emergency room and intensive care unit being told I had type II diabetes and had I waited any longer I would have died. Yet I was determined to learn about and deal with it and begin doing everything I was told and today it is under control with diet, exercise mediation, prayer and taking the medication as directed.
Thus God had given me the will power and courage to go through each and to win. So with this in mind I will go through and do the same with cancer in the jaw. I have the willpower and self discipline and Gods strength to work through this and be a survivor.
As the days go forward there are times that the day looks bright and my attitude is positive and up. At times it goes down and I began wondering how I can and will handle the problems and things that will be coming. When those times hit I reflect on the many victories that I have had in life and then what hits me is the victories all came with help from many others.
And as I give more thought to it I realize that two of the main reasons that I can win this battle are because of my two daughters. I realize that the love I have for both of them and my own desire to be around to continue being able to provide support for them and my grandchildren are important. I realize that the love they have shown for me all these years is so great that I draw support from it. As a family than have been a constant source of love and caring in everything that I have done and faced.
My daughters have been a source of strength because once they heard the problem the action program kicked in to high gear. Even when we first found out about the diabetes they did research found books ordered books sent articles found websites for me to use. They checked almost daily to make sure that I was taking the insulin shots, doing the exercise and eating right. They both either called and/or sent e-mail to check on me.
When we found out about the jaw infection they stayed up with what could be the causes. They worked to help set up the appointments. Andrea went with me to all of them and then updated Bernadette. Working together we finally found a doctor who gave us the prognosis. As with diabetes they started the process all over again now with a different challenge and a stronger purpose. I truly do not know what I would have done without their assistance.
Their positive attitudes and confidence in me and my ability to deal with this has been a great source of support. They have been here to not only help with the physical things that needed to be done but their source of emotional support and love has made the beginning of the journey much easier. For this support and all they continue to do and will continue to do I will be eternally grateful.
My grandchildren have been a source of emotional support because they understand that abuelo can’t do the thing he was doing before. They understand that their abuelo is sick and has lots of work to do to get well. In their minds and actions there are no doubt that their abuelo will get well. Without the right words they know he has a positive attitude and is a fighter and will do all it takes to get well. Amaranta, Carlos, Concetta and Miles are my heroes to because they truly believe in their grandfather.
My friends have shown up in a way that I never expected. As most people who know me, I am a private person about my personal life. Although I am a person who tries to help people in anyway I can. I have through the years given away as much help as I can to continue to help people become successful. I have always tried to assist people through introducing them to others at meeting and giving them referrals over the years. I have used social media as a tool to send out positive uplifting quotation on a variety of topics as well as giving tips and pointers in different areas. It has been my way of giving back to the many friends, acquaintances and others on the various medias.
When I was told I had cancer, I knew I needed to tell some of the people who I have been closest to over the many years. When they were told I was totally surprised at the many positive up lifting responses. It gratified my heart so much when all of them said they were offering prayers for me and so many volunteered to help in any way that was needed. Also many of them said they would pass the information to many of the other friends we shared. For all this and more I thank God for the blessing of all my friends, associates and acquaintances.
My brothers, sister, cousins and uncles and aunts have all been very supportive and have made calls and some have come over to visit. The most important part is the prayers and spreading the information to other family members.
Many blessings, many things to be thankful for during this time.
MONDAY – JANUARY 13, 2014
Today was a day of many struggling emotions. A day of positive highs to a time of being very low.
The day started early because appointments were set early. The first appointment which was supposed to be the only actually was only a beginning of two that took place.
The first was a CT and Pet Scan. While I at first was not too concerned because the last time I had scan it was only a small area used to run over my head. But this was different. This was half tube but it brought back my fear of enclosures. Yes I am claustrophobic. It happened during the time I had congestive heart failure over 12 years ago and it still comes up today. But back to the tube.
The technician was good about showing it all to me and explaining what was going to happen and asked if I could handle it. On the inside I wanted to run, I wanted to see if there were any other alternatives yet I knew it was something I had to do to be able to find out what I was facing. I told her I believed I could so we started by inserting the IV with the radioactive dye and waiting for an hour. I spent the time praying and thinking and trying to find a way to get through it.
We started I closed my eyes and we began I started feeling panicky and told her she brought me out for a little bit and asked if I wanted my daughter to come in and be with me. I said yes and it was a blessing. She talked me through mediations and encouragement as I went through the partial tube and was able to handle the various times I was inside. It was a relief getting it done and being finished with that part of the test.
My daughter had called Dr. Spafford to renew the pain meds. When she went to get the prescription she was told that he needed to see me. So she came and picked me up and off we went to UNM Hospital.
While we waited we talked about the upcoming appointments and I did some writing. We waited for about 2 hours before we were able to see the doctor. He started off asking about the pain and what I was doing. I told him and he then asked if we wanted to see the results of the biopsy. We said yes, so he brought it up on the screen and started going over it with us.
It said it was cancerous stage 4 and was in jaw and a few other areas and described it. It was now very real and very scary. My heart felt like it was going to jump out of my throat. He then brought up the CT and PET scan and started reviewing them and his thoughts without any reading or interpretation of a radiologist. He showed us where it was in the jaw bone, cheek jaw muscle and showed where it was showing in the lymphoid in the neck. This was another blow to the stomach and now was totally real.
He was honest with all he said and answered the questions and some that we needed to digest what we had been told and that on the 22nd of January he would have a plan of action for us to discuss and to make decisions. Given the stage it is odds are that there is a 50-50 chance of eating it.
I was truly totally real it was visible in black and white and now it was not just words. It was hard to process I was scared, I was more confused yet relieved to know that a plan was going to be put in place and to find a new start for this journey.
As we walked out there were two parts of me. One that wanted to cry and wanted to hit something like I did when I was playing football. Another part wanted to cry and another wanted to be held by someone other than my daughter and be told we could win. The other part was creating a different internal strength. A determination that with God’s strength and a stronger faith in God that this can be healed and beaten.
The rollercoaster effect kept through the evening. I reached out and asked a friend to come by just to talk so I was talking to and then person other than my daughters who are both being so strong and positive. I needed to talk to someone closer to my age some just to listen and when I felt comfortable to shed the tears. I was lucky to be able to talk to someone. I was able to release some of the frustration and fear.
In the end I was able to say my prayers and fall asleep for the night.
JANUARY 14, 2014 – TUESDAY
Slept a little later this morning had a goodnight. Wake up in a little better frame of mind. Said prayers and began thinking about the things I still need to get done.
I need to create a set of positive affirmations for my grandchildren to have and use as they continue to grow. I need to create my own positive affirmation for this journey.
I have books to write for my grandkids and others. I have decided that after beating this with God’s help his power and my faith that I will become a spokesperson for people facing cancer of the jaw and others.
Today my daughter came by to check on me we talked she straightened out the apartment a little and then she ate breakfast and went to pick up Carlitos. I finished going over my e-mail. Took meds did some reading and thinking and praying. Called a longtime friend to bring her up to speed and hear another voice supporting me. It was a good long talk.
As I started back to writing got calls from the oncology department and have appointments set up for Thursday morning this week and one Tuesday/next week. It is a relief in a way because we will have all the information to make a good decision on the 22nd of this month.
Finished writing in my journal today and am now going to say prayers and call it a night because we start appointments at 8:00am.
JANUARY 15, 2014
A new day with an early start. Got up about 6:15 a.m., showered, took blood sugar reading and took my base meds for blood pressure. Fixed a Lonnie Special Smoothie for breakfast. Took pain meds before going with my daughter to the dentist for an 8:00 am appointment.
The dental assistant was really good and checked my mouth with the limitations of my pain and ability to open my mouth. She took the x-ray and did it in a manner so it caused no pain. The results of the exam were positive. The doctor saw no problems with the tooth and we should be able to handle the surgery, radiation and chemo.
Spent the rest of the morning with my daughter and my son-in-law (David) brought my grandson (Carlos) over and they had lunch. He showed me his Lego charger and we talked. It was a good diversion having him there.
We are now at radiology department waiting for an appointment for the scan. I am happy the CT scan will only be on the legs and I will not have to go through the tube. I am keeping a positive outlook.
JANUARY 15, 2014 – WEDNESDAY
Today was a day of appointments. The morning started off with a visit to Dr. David Farly the dentist. The purpose is to determine if my teeth are ready for they surgery and radiation and chemo. Going was a relief it was getting done but a little worried about how they were going to be able to check my teeth without me being able to open my mouth.
The assistant understood the problem was going to try flexible bite wings but could not open it wide enough so she ended up doing panoramas of the mouth which was not painful. Then we went back and she used a plastic mirror and was able to see what she needed without causing lots of pain.
After she did completed the exam the doctor reviewed them and said everything looked good and wrote a letter to that effect. This was a relief. One less thing to worry about.
The second in the afternoon was the leg scan. This was uncomfortable because it reminded me of Monday’s scans. The difference was that with this my head never entered the scanner. However this didn’t make it any easier for me. I still felt panicky did lots of praying and meditation. It was finally done and I felt relief.
That was the last of the test for this week. What made the day brighter was my son-in-law David brought Carolos by the house where Andrea and I were waiting to go to the second appointment. Carlos loves coming over to his abuelo’s and spending time.
The next time was after everything was done a friend Catherine came over and we talked and I told her about tall the things that happened that led up to the discovery of the cancer. As a nurse she was able to understand and ask questions that made sense. It was another time I could let myself feel the confusion, the pain, and yet have someone hug me and say we can and will win. Someone who was a good listener and allowed me to show a side other than being totally strong for a little while. It was also good to hear about what she had been doing since the last time we talked it was great to hear about the fun time she had in Disneyworld doing the different races. So all in all it was a very enjoyable evening.
JANUARY 16, 2014
A day with no doctor’s appointments. Today was good had a nice visit with Bernadette Lujan. It was great getting caught up. She has done great many things and is now a doctor of oriental medicine. It was fun hearing all of her great adventures.
Just visited with my daughter and grandson. It was a chance for Andrea to meet Bernadette and get to know each other. It was good for all of us.
The afternoon I went with Andrea to watch Amaranth do her class presentation. She did it on Germany and did it both in Spanish and English. She did a great job. After she finished Andrea, Carlos and I walked around the school until they let the children out of the school.
We had a good talk and then they brought me home. The evening went well. Texted with a friend went through the email and answered some and then sat and wrote until it was time for bed.
JANUARY 17, 2014
Another day of appointments. Started with an appointment with Dr. Benally the Podiatrist as part of the diabetes treatment. While the appointment went well and there are no problems. I made it an adventure by getting lost. I thought I knew where I was going after looking at map quest last night. But I had a senior moment (Ha Ha) and took a bunch of wrong turns. I finally stopped at an office at UNM hospital and asked directions and found I was really off. But found the place just a little late but was able to get in and feet checked.
The second appointment was with the Radiology Department a Doctor Lisa got to get a little early and that was good. My daughters Andrea and Bernadette were with me. I wanted another set of eyes and ears and knowledge to help me understand all the ramifications and to help ask the right questions.
He explained that my case had been discussed that morning. Surgery was chosen as the best alternative at this time. The radiologist concerned and said that he felt that if they could clear out what is there then we can have a better chance of beating this disease.
So far it has only spread to the lymph nodes in the neck and they will be taken out with the surgery. He said that it is going to be a long process. That it will be at least 6 weeks of radiation. I will lose taste buds and will have sores in my mouth and it may be at least 6 months before it all comes back.
He described how the radiation will be done and that there is a CT scanner used. I told him I am claustrophobic and he made a note of that.
He also checked my mouth as best he could and said he was sure the surgery was the best alternative. Bernadette asked questions about the nerves and how they may be affected. He said it will have some effect. She also asked about a few of the areas. Andrea had questions that she asked about timing, things to eat and overall plan. I just sat there and tried to understand and intake all the information and to settle my own emotions.
The afternoon and evening were a mixed tune. Had good thoughts fixed good stuff to eat. Had some down time because the jaw hurt a little more. Had surprise visit by Janix and we talked. And she talked and I wrote notes in response because my jaw was hurting. She gave me a hand and arm massage helped with the pain. It was a good visit.
It was a good evening talked to my daughter Bernadette and then texted with a couple of friends and relaxed while writing. I look forward to the weekend. It should be a great one.
JANUARY 18, 2014
This was a great day overall. Got a chance to meet a new friend and we had a good talk. She is a breast cancer survivor and we talked a little about radiation and surgeries. It was good to talk to someone new even for a little while.
Got an hour walk done and it felt good even though jaw hurt. The jaw has been hurting a lot more today. Even with the meds it does not really go away.
Read email sent some out. Spent some time resting and did a little texting with friends.
Emotionally it has been an up and down day again. I have done lot of praying and thinking. Wrote a letter to a friend it was good to write the thoughts. Will be interesting to see her reaction and response.
JANUARY 19, 2014 – SUNDAY
Started the day going to my daughter Andrea’s house. She picked me up and we drove and talked a little because it was hard for me to talk. We were going because we were going to watch Stars Wars and then watch the Bronco vs Patriots game.
My grandkids both like Star Wars and wanted me to see it with them. I enjoy being with them. We walked and then my nephew Luke and his family came over to Andrea so I got to visit with him for awhile. The kids played with their little 2 year old cousin and we all watched the end of movie.
Andrea made a great lunch. Clam chowder, cheese sandwiches, veggies and sweet potato pancakes. Then we watched the football game. I enjoyed the game with David and the kids. It was hard not being able to talk during the game and explain the plays to Carlos.
I had many thoughts during this time. I enjoyed being with them and wanted to be more active but not being able to do it. I was glad I was there to help continue building memories with the kids. It was a peaceful and loving time and I really needed that and the time spent with all of them.
When Andrea brought me home I did my email, rested and then fixed something to eat while watching the Seahawk game. While I enjoyed the game and the calls afterward I spent time thinking about the time to come. I thought about all I wanted to say to my children and grandchildren the things I want to write for children. The books and articles in my heart to work on. I thought about prayers I have prayed and some I have written. I need some of my little books on success and my note to cards each helping to build my heart and mind stronger for this challenge.
JANUARY 26, 2014
The trip to Chimayo!!
Andrea had suggested we go on Sunday evening after thinking about it I called her back and said yes. She planned on being over at 8:00 am so I got up early said some prayers for the day, took shower and shaved and fixed the usual breakfast of cream of wheat and banana soy protein, activate yogurt and milk smoothie.
She got there a little after 8:00 and as we were getting ready to leave we got a call from Melissa Dr. Spafford’s surgical nurse telling us that the surgery is scheduled for Thursday. She and Andrea confirmed the other appointments with Dr. Farley and an anesthesiologist for Tuesday and then with Dr. Spafford for Wednesday.
It was good news that he had changed his schedule to do it and a relief that we are getting into action. It is also a scary feeling because I have never had a major surgery other than tonsils when I was a child. So here it is now real and an action made. Andrea called my daughter Bernadette and sister Gloria to let the know and I sent a text to my brothers. Bernadette Lujan and Catherine Rael to let them know when it was scheduled.
We were then off to the Santuario. It was a good trip. I had not been out that way in a while. I know it was harder for Andrea because I was not able to talk much. That has been the most frustrating part not being able to talk long or clearly.
It was a great trip went through Nambe and I remember how pretty the area was during the spring and summer. It has been a few years since I have gone that way. It still was a pretty drive and brought back memories of going up that way years ago.
Many different thought from the past that were good and others not so. Yet as a whole it was good. As we got to the Santuario I tried to member the last time I was there. (Gloria’s note: the weekend that Bernadette got married, Lonnie took John and I on a driving adventure which included a wineries, Nambe, the Santuario, and lunch at Rancho de Chimayo) I tried to remember who I was with at the time. Strange how I could not locate the memories. We walked up the back way to the church and I was amazed at all the things they have done to improve the grounds. When we walked into the Church, we saw the priest and went and talked to him. I hold him that I had stage 4 cancer in the jaw bone and muscle in the jaw. He asked if we going to stay for mass. We asked when and he said at 11:00 am and it was 10:50 am. So we said yes. He asked us to feel out a card and place it on the altar. We did and before going in I filled two spray bottles with holy water.
We went into the church and sat on the front pew on the right hand side. It was quiet and we both began praying our own prayers.
It was a powerful feeling being in the church and sitting there with the sunlight coming through the windows. All I can remember that the prayers just came out in no particular order and I cannot remember what I said. It was a call for healing, strength, courage, faith, help for me and my family. Prayers of thanksgiving for many things.
As mass started it was a strange feeling but the priest was good and made the mass entertaining as well meaningful. He called the people who had placed cards on the alter and gave us a blessing. He finished mass and reminded everyone that God is the great healer and the guide of our lives. It was just a blessing in and of itself that we were there and were part of it.
We went after mass into the place where the holy dirt is and placed some on my cheek and neck and asked God for his help and healing. I left a tie and tie clip with the hope to be able to use tie again and get back into working.
We left and went to Rancho de Chimayo to eat however it was closed. Then went to Tomasitas in Santa Fe. I had hueveos rancheros ate the eggs (very carefully) and mashed some beans and I had guacamole.
The trip back was good and the day with my daughter was a great blessing. Back home I spent time thanking God for the day and reflecting on the blessings of the day.
Thank God for such an uplifting day.
JANUARY 21, 2014
This is the day for two more appointments that make the final decision real. The first appointment was with Dr. Esme′ Finley the oncologist. I once again gave God thanks this morning for a new day and for both my daughters. It is sometimes hard to articulate feelings and thoughts. But I remain thankful that God has given me this life, with all the many blessings and the challenges. That has helped me grow spiritually and emotionally. Each one preparing for this major challenge.
We are at the Cancer Center waiting for my daughter Bernadette comes in the door. She flew in last night to be here with me and her sister for this part of the challenge. We talk a little because my jaw hurts until we are called back into the office areas. They do all the vitals and everything looks good.
We now wait for the doctor to come. They were running behind so we spent a lot of time waiting for her. We talked about what needed to be done to make sure we are ready for this Thursday and beyond. They did most of the talking and I talked when I needed to talk.
The doctor arrived and went over the history again. Andrea gave her a document that had the information for her. I am glad she has that for all the doctors. She did an examination and reviewed the file and said she would be our contact through this period. She said depending on the finding of the tissue from the jaw and muscle and lymph nodes that chemo might be necessary but it would be a decision we would make in a month after surgery. Once again feeling of relief that action was moving scared about what I had heard about chemo and its side effects. One day at a time.
Girls took me home while they ran errands until the next appointment. I spent some time outside in the sun and prayed and thought about all the things involved not only in the surgery but things leading up and the time after.
Ate some soup and smoothie waiting for Andrea. Bernadette bought them from whole foods. The hardest part of all this is not being able to talk and share all he thoughts at any one time.
We went to antheseologist and played the waiting game at least we got some work on the Power of Attorney. We met with the nurse and she took vitals and told us a little about the process. Start at 6:00 am at Pre-op and then meet team and have surgery.
They are going to put me to sleep for the entire procedure – thank God. It is scheduled for 10 hours.
After the nurse the physician assistant met and gives us more information and there sent us for a blood test. It was all good. I keep telling myself it is all part of the process. And as we continue there will be more and more tests. At least my heart and lungs are clear and good. That way we did not have to do an EKG or any other test.
Went back home and did my email and then rested and fixed soup for dinner. After dinner I relaxed and started writing in my journal, answered a few text messages and to the best of my ability phone. It was lots of positive messages so it was good.
After taking my meds it was off to bed and went out like a light. Woke up a couple of times took some meds and back to sleep.
Another full day tomorrow.
JANUARY 22, 2014
Today we went to the bank and took care of some financial business and we got all the official papers signed so now Andrea and Bernadette can act on my behalf. I am glad that is done. It is a relief to know that they will be able to take care of all things while I am in the hospital.
We left to go to Dr. Spaffords office for the final instructions before the surgery tomorrow. We have been waiting for over two and half hours. Andrea, Bernadette and Bernadette Lujan have been sitting with me. They talked – I listened and talked when I could. It was good to have all 3 of them take their time to be here.
As I sit here the pain hit and BJ Lujan used pressure points to help relieve the pain that was a great feeling. I am one of the most fortunate of men to have such great, giving daughters and friend like Bernadette Lujan to be here. By blessing for me and I thank God for them and ask him to watch over them.
I sit here and think of the call made to Martha Powell another of my special friends. She has gone through cancer surgery and treatment and continues to be a winner. Her prayer and encouragement brought tears to my eyes and warmth to my heart.
We listened to Dr. Spafford and his explanation. Am glad it is getting done. Mixed feelings about all but glad it will be over tomorrow and start a new journey!!
Heading off to rest and bet and get mentally ready for the surgery.