Lonnie’s Journey Part 2
It is hard to sometimes reflect over the last few weeks. The time going into surgery with my daughters was a very scary day. So many different feelings one of glad that it was happening and then second that I would not see my children again.
In recovery I have no idea what was going on. I remember hearing my daughter’s voices and then hearing the nurses. But as to what they said I do not remember. I know that it was hard to sleep dreams kept me awake. I remember reaching for my daughters for my daughters hand and holding it so I could sleep.
The nurses must have been good at working with me and helping my daughters. One names Chris was very patient and talked to me a lot. He even took me outside for a little while another of the nurses told me that I could get well it was just going to take time. He was also tougher in his approach to helping me. The others I do not remember.
To all the people that came to see me when I was in the intensive care unit. I thank you. I somewhat remember but do not have it all together. I knew I tried talking to some but do not remember everyone for that I am sorry. I am grateful to you who came and gave your time. Two people I kind of remember Catherine friend. Dr. Chris I remember promising Catherine I would get well. I vaguely remember others. I kind of remember talking to Roberta but have no idea of what I told her.
To the others of you that came during that period of time I thank you very much for coming to visit me. It is hard to reflect and not remember who you talked to or what was said.
As I moved to the next level of recovery things became less foggy and I remember people coming and visiting. In some cases I could not talk so I used to write out what I wanted to say. The one thing I do remember is how grateful I was to each and every one of the people that came and spent some of their precious time. It helped the day go by quicker and helped me in the healing process.
I want to especially thank my sister Gloria who spent her days and some of her evening with me. She encouraged me took me for walks and visited with the doctors. She was the go between with the doctors and my daughters. My great team of Andrea, Bernadette and Gloria were constantly in contact and working with the doctors and myself.
The one thing about the time in recovery the nurses and others who worked there were kind and did what they could to make my life there better.
The time there was hard for me. First I have never had surgery in my life. Secondly nothing of this serious magnitude had ever affected my life. To have cancer and to have a surgery that removes your jaw and many of the nerves in the fact cut and to then have a bone taken from your leg and used to shape a new jaw is amazing. The swelling in my face made it seem like it was someone else and not me. The time in the hospital recovery has a time of introspective, a time for talking to God trying to understand why this happened and especially at this time of my life. As with all things there were no answers from God. I come to realize that He has a greater purpose for my life than I had dreamed. So my life is truly in God’s hand.
Coming home on my birthday was one of the happiest days of this process. Now that I am home my youngest daughter Bernadette has taken two weeks from her busy life at work and also leaving her children and husband. My gratitude is so great it is more than words can even express. The sacrifices she and her family have made show a depth of love, understand and it touches my heart.
The last few days with my daughter have been great in many ways. It has been a time to talk even with my limited talking. She has been a great help in fixing my meals and helping with the wound care. She has made sure we do our exercises and that the meds are taken. She has been a God send in being here.
My brother Lionel has come through for me as well. He comes every morning to help me with my shower and he does all the wound care. This is going to go on for a few more weeks and I am so glad that he is able and willing to do this for me. Another show of love that has made this a little better.
February 19, 2014
The day started as usual with my brother coming to do the wound care after my shower. My daughter came and got breakfast ready and reviewed our daily schedule. Today there are visits to Dr. Spafford and Dr. Lee.
The visit to Dr. Spafford was very positive. He was very pleased with the progress I am making. While he is please I sometimes feel that it is so long and I can only see the many months ahead before I reach something resembling normal.
The visit with Dr. Lee the radiologist was one of very mixed emotions. He proposed once more healing had occurred that the radiation and chemotherapy could begin. While this in part is good news it is also very scary. The prospects of teeth are very unsettling. Yet I know on my mind and heart it has to get done if I want to make sure that the cancer is completely gone.
The unsettling part is the mask that is used in radiation. To be held in place with the mask over my face and not be able to move my head is very scary to me because I am claustrophobic. But with God and Jesus with me I will get through it. It will be 6 weeks, 5 days per week. A total of 30 times for the radiation.
Next is what the side effects will be how it will affect my ability to eat. They say I should be eating 3000 calories/day to maintain my weight. They are talking about inserting a feeding tube in my stomach. But so far nothing has been scheduled.
This to is something that I do not look forward to having it is another invasion of my body. This process to heal from cancer is long. First it took so long before anyone could diagnosis what the problem was and then once they did everything happened to fast.
While I am glad that found what it was and then did something it was just the beginning of a very long process. The surgery lasted 17+ hours, then in ICU where I do not remember a lot and then to another recovery unit. A total of 3 weeks and it seemed like forever. Now facing the 6 weeks of radiation and chemo thrown in as well.
As I sit here reflecting on the last month and all the mixed feelings that have gone through me and my mind, it is amazing in a way how far I have progressed. But it is not my work alone it is God and his son Jesus working and guiding and assisting me along the way.
My mood and feelings have been like a rollercoaster. Sometime I am up and very positive and at other times feel low, anxious and scared. It is hard during those times. When my daughter was here with me I tried very hard to always be up and positive. I didn’t want her to know how scared an anxious I really was. However she sensed and we would talk and I would cry some and feel better and start being my positive self.
After she left my brother came and stayed with me. It was easier to talk with him. I used him as a sounding board and I used his shoulders to cry on at times. He is my younger brother Jerry and now lives in Texas. So he listened, we talked and prayed lots. It has been a great blessing to me. It has also created a closer bond between us. The journey that I am on is one that God had planned for me from the time of my birth or before. The nature of the disease is not pleasant it nonetheless here and now. This journey for me is one of learning, reflection, repurposing and of making significant life changes.
As of right now today I have had to learn to depend upon others and especially my family. The love patients understand and every present help of my daughter has been great and more than words can ever describe. They have been there every step of the way from the initial problems with the jaw through the diagnosis of diabetes through the diagnosis of cancer of the jaw, surgery, recovery in the hospital and being with me at home. The bond between us has grown even stronger during this time.
As time has gone on my life continues to change. I believe on growing closer to God and developing a stronger faith. I believe that as time goes on I grow closer to my children, siblings and some of my cousins. God has blessed me with a great and loving family.
While the days proceed there are some days that are filled with joy in spending time in prayer and in positive thoughts. Other days become mixtures of both positive and negative thoughts. I am learning to acknowledge those negative thoughts and then remove them as false evidence appearing real. There are times that I argue with God. I know that it is useless but it helps get out the frustration. I have found some verses that I use daily that have been a great help in dealing with ups and downs of this disease.
The beginning of this last week brought back uncertainty as chemo (now called biofeed back therapy) begins with radiation to follow. The uncertainty of what to expect and how my body will react brings scary feelings. I counter those with thoughts of the positive nature of going through all this.
I realize that going through this process is only a small thing compared to what children dealing with cancer face on a daily basis. While we who have cancer face may challenges and have many changes in our lives to deal with. The ones who deserve the most credit are the families. In my case my daughters have been true champions. While they are used to seeing their father the strong brave one and one to be there for them. They have been the ones that came through for me. They go to appointments and ask the right questions. They have been there every step of the way. From the diagnosis through the treatments. While I do not remember much after the surgery I know that they were there day and night. They did not leave my side from the early morning hours that surgery was finished and through ICU recovery. While neither has said it must have been very hard emotionally to watch their father through that time. I know that hope prayers and confidence with the doctors is what kept them strong and with courage. That strength and courage has helped me in the process.
Some wonder why I do all this, the simple answer is that is God’s will and I have a purpose that is not yet complete. I have lots to live for I have daughters that all need a father around to be there for them and to be well. I have 4 lovely wonderful grandchildren that are growing and need a grandfather around to be there for them and help them. I have 2 brothers and a most lovely precious sister who still need their older brother to be an example and to be there for them as an advisor and loving brother. I am blessed with cousins who look to me as a family leader. I have promised to be here for them and their children. And then there is being healthy for me. I want to get back to doing more of what I was before. But more importantly I want to become a speaker for those who have cancer and to write books about the journey and to also develop children’s books about cancer and how it affects people’s lives.
I am not into my second chemo treatment and sitting here for another 25 minutes before it is done. I have finished my 3rd radiation treatment. The worst of the two is the radiation. I have to take valium to be able to get through even though the actual time in the machine is only 8 minutes. The hardest part is having my head tied down and locked in place.
I am working on that feeling of being enclosed with the mask but it continues to be a problem for me. But with 27 more times I should be okay soon. But for now I use valium as a means of relaxing. I take it 30 minutes before the treatment. Once I am in the room and on the table the prayers start in earnest. When they place the mask over my face and tie it down I close my eyes and pray and pray. I repeat verses from the Bible, full and partial, I make up my own and sometimes I just repeat the name of Jesus over and over. When it is over I thank God and mark one more off.
As I sit here writing I think of the positive thoughts that I have had and the positive little wins I have made over the time. While at times I get down on myself and frustrated with the circumstances, I realize that this is all part of God’s plan for me. It is up to me to understand the learning and to learn how to redefine my life purpose in line with God’s plan for me.
This does not mean that at times I don’t get mad at God. It doesn’t mean that at times I talk to him about why I am mad. Because all this if fine, he already knows how I feel and has forgiven me even before I articulate it in my broken voice. I also give him praise and thanks giving for all the many blessings.
This has helped me go through this process of healing this disease. I am now at Dr. Spafford’s office only to see him for a checkup. As I sit here I remember back to the first time I saw him. He was very through and gentle considering the condition of my mouth. As he looked and talked he decided to do a biopsy to confirm his initial diagnosis of cancer of the jaw. The biopsy confirmed his diagnosis and things went very fast from there. CT scans were ordered and done, x-rays taken and read and before I knew it the surgery was scheduled.
It all happened fast because the cancer was dangerous and growing. So his decision was a good one though the whole things was scary for me from the moment he said there was oral cancer.
I have been here to his office several times since being released from the hospital. Each time he has been pleased with the overall progress. For this I thank God and Jesus for being with me and healing the jaw and leg.
It has been hard work going through this process. I try to work out every day by walking and am up to doing one mile in 18 to 20 minutes. While it is a far cry from what I did before it is steady improvement and I look forward to begin increasing the distance as I finish all the treatments.
Trying to eat 3000 calories a day is hard. You don’t think about it when you can chew and eat whatever you want. But when you have to eat pureed soups and very soft stuff like sweet potatoes, mashed potatoes, avocadoes, yogurts and smoothies it gets harder.
I have been using Boost and Ensure high calorie drinks in my smoothies to get more calories. I even add coconut oil, flaxseed and wheat germ for calories and protein. I top off the smoothie with flaxseed milk for more calories.
In Friday of last week the dietician said that I need to be doing 5 of the Boost plus with 520 calories 5 times a day. So once I get the feeding tube I guess I will be getting that feed through the tube. I need to continue eating and drinking to keep my throat open during the radiation.
On Tuesday, March 18th, I am going for the feeding tube. Here it is on Monday the 17th and I know that tomorrow morning I have to check in to the hospital and the procedure will be done. There is the part of me that is scared of being in the hospital again, I understand on the mental level why it needs to be done. It is to my overall benefit to have this to make sure I get the right nutrition through the process of radiation and chemo. Sometime it is hard to decide what to eat and to fix something even though you know you have to have something to eat. So in essence it will help.
My daughter Bernadette ordered the book on getting more calories. It is good but lists lots of the foods that I cannot eat yet. The ones I can are the yogurts, cottage cheese, avocadoes, sweet potatoes and a few others. I would like to be eating all the ones they list but with my mouth it is not possible. So I will continue doing what I have been.
The doctor’s appointment with Dr. Spafford is done. He checked my mouth, neck and jaw and is very happy with the progress. He said no cancer and he is happy with the progress of the leg. The only thing is the fissure in the mouth. He suggests getting a plate placed in my mouth. But said it was not an immediate issue.
The next time I have to go see is in one month (April 21) that is great news. The bonus for being at Dr. Spafford’s was getting to see Mindy (one of the doctors who took care of me at the hospital and Dr. Spafford’s.) She is a very good person and caring for patients. She made a point to come see me and hold my hand and give me a hug. What great bonus for being there and made the day even brighter.
I went to my first cancer therapy workshops and had the opportunity to meet new people who are recovering from cancer or some who are going through various stages of treatment and others where having reoccurrence of cancer. Each person is an example of strength in their own way. They show true ways of learning to cope with this great life change.
The first cancer assignment was writing. “How have my wounds shaped me?” It was interesting not only writing it but listening to the responses. Everyone interpreted differently the assignment and wrote truly what came to their mind in a short time. It was a good exercise for me as well. Even though I am writing in my journal. Just having different types is good. I will include the writing as part of the journey I am on.
I am now setting here waiting for radiation. I have already taken the valium so in a few minutes they will come and get me to go in for treatment. I will begin my prayers in a few minutes asking God to be with me as I begin the process. This will be one more day completed. Tuesday and Wednesday I will not get a treatment because of being in UNM Hospital for the surgery. It will start all over again on Thursday.
God is with me this day and always he will not forsake me or leave me. I just need to stay in faith and believe and thank him constantly for the healing that is occurring.
It has been a week since I last wrote in this journal. It was a week that had many lows and a few highs. The whole thing of a feeding tube was not something that I had wanted but had come to terms with because of my daughters concern and the doctor and dietician. The process according to the doctors was supposed to be routine and no big deal.
Dr. Finnely said that she had me one of the best surgical oncologist to do the job. So we met with Dr. Frey who was dynamic encouraging and was confident that everything would go well. She said that we would go in on a Tuesday and if things went well be out Wednesday no later than Thursday. I was okay with that as much as one can be when you are going to be in the hospital. Monday was usual day and did my radiation did a walk and ate what I was supposed to have. Did my shower as per instruction and visited with Bernadette Nevarez. Said lots of prayers and tried to sleep as much as possible.
Tuesday morning took my shower and the meds they asked me to take. Andrea picked me up early and off we went to UNM Hospital. We went through the check in process and waited for them. Now I feel my speech had improved greatly and my pronunciation was getting better. So here we went into a pre-op for them to get me ready for the operation. Drugs and stuff to numb the tongue and throat. Said my prayers during the time and had Andrea by my side as long as possible. I was still a little (lot) scared even though I had met everyone that was going to work on me.
Then it was into the operating room. Where all I remember was moving from the bed to the table and then placing a tube down my throat and me choking. Then it was lights out and the next thing I remember was waking up in the recovery room. The nurses there were good and very attentive to me. The biggest problem was they couldn’t find a room on the 6th floor for me. So I had an extended stay in the recovery room until about 2:00 am when they said they had a room on the 5th floor. I was glad even though I was still in pain. I only used the morphine twice in the recovery room because it causes me other problems mentally when I use it.
By the time they moved me into room it was after 3:00 am and then all they had to do up there started and getting hooked up to all the various monitors it was closer to 5:00 am that I was trying to sleep. But of course that is a joke in the hospital and with the pain I was having from where they had to make the incisions. So I was loaded with pain meds as well as all the other stuff they were giving me. Had some visitors Wednesday afternoon and that made the day go by a little faster. Sleeping was a joke again.
Tuesday morning was another day shortly with hope of getting out. All the need to do was test the tube to make sure it worked. They started about mid-morning with doing a water flush. It caused a very severe pain in my side and stomach. They stopped and called the doctor. Now I was not a happy camper. This was supposed to be a painless process that caused a great deal of pain. First the residents came in and looked and tried again with some shooting pain. This then started a series of pokes and questions followed by x-rays. Then Dr. Frey ordered a CT scan of the stomach area to see if she should further identify the problem. (this was the first time they had encountered this problem.)
Once she had received all the information the decision was to do the operation over again to place the tube into the stomach. While I was not happy about it I knew it had to be done. So Thursday night I am in the operating room trusting the doctors that everything would now be fine. When I was in recovery the doctor said that she had tried it and it worked.
Tuesday morning still in pain but they said the surgery went well and everything was now fine. I am still not sure but am willing to do what it was going to take to get out of there. To this point I was frustrated and a bit angry because this was not supposed to be complicated.
They do a flush and some water comes out so the doctors come in and reset it and then on Saturday it was tried again and was some boost like fluid and it all seemed to do well. So I was told if I had a bowel movement and urinated that we could go home. I said I would do that and began ring water and liquids as much as I could handle. I did what they asked and then while we were waiting for a doctor I asked to get up to go to the bathroom and it falls out again.
They wash if off and stick it back in and do tests, take x-rays and say that it’s all fine and we can go home. I am glad but wonder why it keeps coming out. But they seem to think it is a normal thing that happens and I have to learn to put it back in a fill the balloon (It’s not supposed to deflate).
So I am happy to be back home I have the boost I am supposed to have, take a shower and go to sleep sitting in the recliner. Sunday is an uneventful and I stay in and simply eat and stayed in the chair. Slept in the chair again that night.
Monday get up to take a shower and I go to radiation and chemo. Monday my home health care nurse Catherine came in to clean the wound and teach me how to flush the tube. So she places new gauze and start putting water in the tube and it runs out. So we try again with the same result we try to reset it back with no luck. We call Andrea and I let Catherine explain it to her. We then just rebandage the tube.
Andrea finally gets hold of one of the surgical oncologist on call and he only suggests to go to the ER and this was at 10:00 pm. We decide to wait until the next day after radiation to talk to the doctor.
Now by this time I was totally angry and frustrated with the whole thing. We meet with the Dr.’s PA and he sees that it is out and the balloon deflated and he could not do anything with it other than saline solution and see it flow out of the tube. He sends a text to Dr. Frye and simply places the tube back in the hole and bandages up again. We wait for alternative from the doctor.
So I still had the tube but it is like a place holder doing nothing. I see Dr. Lee the radiologist on Thursday and explain everything to him. He suggests taking it out and me eating more and more. So I agree.
Dr. Frye suggests another procedure through the radiology. They explain the process to Andrea. I read it over talk to Dr. Lee and he still believes that we can do it the other way without the tube. So I continue to agree with him and eating and drinking as much as possible.
On Friday they pulled the tube out and placed bactine in it and bandage it and that all I have to do until it’s healed. Happy to sleep in my bed again.
This process has been very frustrating and caused me lots of pain and was of time in working out and in loosing time with my speech and eating. Now having to start over again. But I will get back to where I need to be.
This weekend has been busy. I have visitors all weekend. On Saturday my Uncle Izzy came over to visit. Rich Holtzin a friend of mine came over for a while and we talked for a while about writing books. Then a surprise call and visit from Shawanee Edwards a friend I had not seen in a couple of years. We had a great visit and went for another walk in the neighborhood. Today I got 2 miles plus in that was a good afternoon. (We met Ruben one of the neighbors).
The evening Bernadette Nevarez came by and spent some time with me it made for a good overall Saturday. Sunday was good as well. Janix came over we had a long talk and went for a walk. Got another mile in. Watched game basketball and going to fix something to eat and then work on some thank you notes.