Category: Doctor

Health, Not to be Taken for Granted

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3/12/19

Today is the 29th anniversary of when my cancer journey began. I went to the first doctor’s appointment on this day, and that doctor had a small part in saving my life…

“Don’t take that for granted.” Health is a gift we are given each and every morning we wake up, and each and every minute of every day of every week of each year. To take something for granted means to underestimate the value or expect it to always be available. When our health is compromised, boy, it sure makes us look at its value. How often do we think about the chance that it may be our last minute on this earth? I do not mean to live in a place of fear that we may die, but live in a place of realization we have to make each minute count. I think about it often. About once a week, I wake up with the prayer of thanksgiving to God for the breath I have for another day.

Very unplanned, but it just so happens that today I am getting ready to head to a doctor’s appointment for a physical. For the most part since cancer, the effects of chemotherapy have not raised their ugly head. Chemotherapy is very hard on a body; most people understand the physical effects. The long term effects have made their way into my life in recent years, and even hitting the forty year old mark has added to my demise. I have heard people say once they hit forty they had all these new health problems. I say to myself that age was really what I am dealing with, but I have had confirmation from a doctor or two that we are dealing with chemotherapy effects. Well, if I got almost 30 years of a healthy life, I feel pretty good about it. Now along the way to this point, my husband and I dealt with the emotions of infertility, and that is another story I will share.

Skiing down the mountains in Colorado on a green run with my son a few years back, turned into a torn ACL and a silly trip on the medic sled. I had made a hard stop because he had fallen and down I went. Within a few weeks, a trip to the doctor in the nearby town and one at home, a replaced ACL, and crutches for a week because the doctor did not want any weight on it. No weight is not the typical pre-op instruction, but he had some concerns. At my follow-up the doctor explained that once he was in surgery, he had seen what he thought was AVN or a blood loss in certain spots of the bone that he attached the new ACL to, so I would need to be on crutches for eight weeks. Good as gold in the seven years following and a return to the slopes; although my skiing is not as crazy or hard core. Within the last year, I have had pain and the doctor said the AVN is progressing and laid out options. He confirmed AVN would be an effect of chemo.

This is one of a few things that I have dealt with in the last year. Not all have been associated with treatment, but it has become real to me that I may be dealing with a whole new way of looking at health now. I do not want to take for granted what health I have been given as something may be taken from me in the near future. The use of my knee is very much still there, it is just painful to do certain things. In addition, my sight has been compromised, lately, and health became even more important to me than in the past. I am very interested in laying all these things out on the table today at my physical, and hear his thoughts. Once a person has cancer they just need the confirmation each year that they are doing ok. They just cannot go each year without blood work or a physical to let them know everything is good. I moved away from all of my oncologists and the hospital that treated me, so finding someone to take you on is a little uneasy.

You see, about ten years ago I walked into this doctor’s office ready to meet a doctor that could keep track of me. I had told my OB/GYN that I really should find a doctor because of my history, unbeknownst to me she was married to an adult medicine doctor. She told me about him, and my husband and I set up an appointment. The doctor was pretty excited to see me because as he put it, his “group of doctors specialize in adults with childhood cancers.” What a God-send! We have had complete work-ups, and I have come out in really good health. Praise the Lord.

Living life makes it easy to take health for granted because living life involves so much. Home life, family, work, church, sports; all of these things keep us so busy that losing our life the next minute is further from our thoughts. But I think that is ok, because I believe that God put me and each person on this earth for a purpose; to live a life for Him. When we go throughout our day, it should be our thought to give God the glory for each breath, for each healthy part of our body, and for each unhealthy. The use of arms, fingers, knees, backs, are all gifts from God. I really do thank Him for the fingers I have to type this blog article, my sight to see the words on the screen, and my back to be able to sit up. Call me crazy, but I want to encourage us to think about all the little things to be thankful.

I had a journal last year that I started writing a 1000 things to be thankful for. I really must go back to that this year and keep going because I never did finish, even though at one sitting I could write down 50. A couple of the things I wrote I was thankful for were the drips in the faucet which reminded me that we have running water, and the piano practice with the beautiful and not so beautiful notes. The little things add up and remind us how wonderful it is to be alive and have the health we have. Please remember those little things and live a life for God today. It may change tomorrow.

Hope and the Dream Fulfilled

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2/27/19

For those who are keeping up with the blog timeline, this week I was able to write up a second post which is a memory from the first summer after diagnosis. I inserted it into the timeline so it should appear on November 16, 2018. It is called, “The Last Time We…”

Spring 1992

I hit the two-year mark since my diagnosis on March 15, 1992, and cancer was a thing of the past. We had gone back to the hospital in January, and they had removed the IV tube from my chest. Now that was a really interesting feeling, but we won’t go into any more details! I was now living the teenager life. I enjoyed my favorite past times even more: shopping, talking on the phone, and hanging out with friends. At forty-seven, my past times have not really changed much, but I have added hanging out with my husband and children to the top of the list! I enjoyed monthly youth rallies with our youth group at regional churches in the Salt Lake area and school choir concerts and performances.

I was in tenth grade in our local high school. Call me crazy, but I recently found report cards and testing scores from high school. Why mention them here? I was amazed at what I found, because I had just spent months on chemotherapy and fighting cancer. I refused to stay at home or wear a mask to school. I was determined to not change my life for this even though it was changing my life. In April of my 10th grade, we were given state testing, and I scored above grade level in most everything. I was taking Spanish II, Pre-Calc, English, Science, Art and Choir along with being an aide; and I had about a 3.5/3.6. How does that happen?! I spent most of my afternoons after school doing schoolwork, and I had great teachers that would allow students to pop in before or after school for a little extra instruction. Plus, we kept them posted about my absences, and they would send home my homework when I left for treatments. I worked really hard; my GPA never really improved, but at least I stayed consistent.

Life was even more exciting for me, because I had been watching my brothers play sports for the last two years, and now it was time to join them. I had missed the opportunity to play at the high school because most of the time a person really has to make it freshmen year. They try to make the team then and see playing time, improve skills, and learn to play with each other; then the next year is a bit easier. I decided not to jump in, knowing I was behind on the ability chart. Being the spring, track was about all that I was interested in, and hurdles ate my lunch when I tried them in 8th grade. They went up to about my chest anyway. Everyone else that ran in track had these amazing long legs that could cover 8 to 10 feet with each stride. My two to three-foot span was not idle for running track, although I was fast as a kid, in my mind. Ha! So high school sports aside, I joined the local city girls fast pitch softball league. Some of the same girls that I went to school with and who played volleyball and basketball at school played for the league, too, so that made me feel better.

My brothers started the spring season in their perspective leagues. The oldest played Babe Ruth and the youngest played T-ball. Back then our little town had one four-plex that had all three size fields, and I remember on more than one occasion dad walking around from field to field watching all three of us play at the same time but at different fields. On my team, I quickly became the right fielder, then third base, and did quite well, but I am pretty sure I had the most strikeouts and walks. Either I would swing and strikeout, or I would crouch down really low where the pitcher had a minuscule strike zone and would walk me. By the next season, I figured out the batting part, because our coach told us to let the first pitch go and then on the strikes start your swing sooner than you expect to make contact. I had such a great time!

The next two years would be follow-up oncology doctor’s visits to do blood work and keep an eye on the remission I was in. In addition, we had cardiology visits to determine the next step with the heart problem that we just kept at bay during the treatments. It had not gone away so we needed to make some decisions. But, I really enjoyed the new life of activity and school all the more. Along with my past papers I mentioned above, I found other things like a huge stack of my medical reports and then a couple of school papers I wrote in English in the early fall. My English teacher kept us going with writing papers and poems. I remember she wanted us to tell about a dream we had for our life. One poem sums up my cancer experience in only a way I could tell it, and at the time we had just had the reoccurrence scare. I want to share it. (I typed it up exactly how I had typed it back then.)

Dream Fulfilled

Did I fulfill my dream, or did I waste my time?

No, this dream is accomplished, I know, in my mind

I will have gone through and finish my treatments.

Will I be ready if I have to start again?

This time will I be cured, or have to go back in?

Can I handle the pain, and keep back the tears?

The first time was hard, in the hospital on the bed

Catching up on schoolwork after I miss 2 days, I dread.

Will it all be worth it, in the end?

I think it will be

I am alive, and well, you see

With the help and support from my friends.

Most people send mail

My dream is fulfilled, and I am alive and well.

I like reading over this, because it opens up many thoughts that people go through when going through a trial. The uncertainty is definitely the underlying tone, not just because the poem is about a dream. The hope of life and health is a close second underlying tone. Lastly, the support shown did not get lost in the hard façade that I kept up for others to see. Those people made a huge impact in my ability to fight this disease. A trial takes on a whole new meaning when others are by our side. And a dream of health, full head of hair, good grades, sports, and a new life was at the forefront of my mind.

Dreams and hope. My life verse came to me after my husband and I were married, and trying to have children. It really sums up everything I have faced. Proverbs 13:12 says, “Hope deferred maketh the heart sick; but when the desire cometh, it is a tree of life.” Hope is very real is our lives. We hope we see family again, we hope we get a raise this year, we hope for children, for health, for safety… There are times when God says wait; let Me show you later. It makes our heart hurt when we cannot see the big picture; it gives us a heavy heart which I spoke about in the last blog post. But then after the hope is deferred for a certain amount of time, the desire comes and it is even more special because of the waiting period. Maybe it is because we know our dream will be fulfilled.

A Day in The Life of a Teenager

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1/28/19

October 1991

Have we ever thanked God for our hair? Many people, many teenagers and women, sometimes do the opposite with their hair. It is funny because I have had this conversation a hundred times with others. If someone has straight hair, which I raise my hand right now because mine is stick straight, those people look at someone with curly hair and may want just an iota of those waves. Then someone with curly hair may look at those with straight hair and think it would be nice to have less curls. No matter the texture of the hair we have, it might be a thought that runs through our mind what it would be like to have curly? Straight? Short? Long? But have we ever thanked God for the hair we have been given by God?

When I was bald and nearing the end of my chemotherapy regimen, I told myself that once my hair grew out I would never complain about my hair or a bad hair day ever again. Now, I do not think that I have stuck to that statement, but bad hair days hardly happen because I am constantly reminded what it was like to have no hair for more than two years of my life. At the ages of 13, 14, and 15 to be exact! I spent those years in a wig and worrying about it coming off in the wind walking into school or a store or some place that I would be totally devastated if someone saw me. I did not embrace the bald is beautiful, but I think that is ok. Each and every chemo patient can be confident in different things about their situation, and no two people are alike when faced with this disease. Why do I say that? Because a cancer patient has to have confidence in something, or it is a struggle to live.

I was truly confident in other things about my cancer. In the back of my mind I knew that I may not get well and have a normal life again, but those thoughts were so far back there, they only surfaced a couple of times. The confidence that I was going to get well and have a normal life again were prominent. They pushed me every day to get out of bed, get dressed, go to school, work really hard at my classwork, come home and work really hard on homework, go to bed, and do it again the next day. My brothers and parents kept things normal for me as well with breakfast together, and bike riding, and sporting events, and Saturday morning cartoons. Those thoughts of normalcy pushed me to live a life of a teenager that many can relate to. I really kept cancer away, which makes me chuckle because it was so prominent in my every day life, especially when I took off my hair to shower and go to bed. I focused on friendships and the good and bad that came with that, like “Why was she mad at me?” or “I cannot believe she did that!” to “I think he likes me.” When I look back on my diaries during these years, they went somewhat like this:

“Today I had a history test and failed it so bad, and we started our songs in girl’s Jazz choir for the spring concert. I am so excited! So and so and me get to go shopping tomorrow in SLC. I really need a new shirt really bad to go with my new shoes. When we get done my mom is taking us to eat at… So and so at school likes so and so, and I like him, too, but he will not even look at me. I am just going to forget him and find someone else to like! He is not worth it. I had chemo Monday.”

As I flipped through my beloved diaries from this time of cancer and chemo, no lie, every single one of them were just like the above paragraph. Trying to be confident in normalcy? You bet. Cancer patient? Definitely, just a teenage one at that. In all areas of life, I believe we have to have a positive outlook, a confidence in something. I put my trust in the Lord Jesus Christ when I after diagnosis, and I did and can fully, 100% trust Him to love me, guide me, direct me, and heal me. I put my confidence and trust in Him 100%, but during this time in my teenager mind, I had to tell myself, “Just be normal,” and those words gave my teenager mind a better outlook for my situation, and I believe it really helped me feel better. It did not heal my body, but it healed my mind.

Also, at the forefront of my mind was the fact that my last scheduled chemotherapy was in October. The month before we had the virus scare thinking it had returned. We walked into this chemo with excitement and hesitation because we had questions about the future. Before I started on my drip, we met with the oncologist. My mom asked questions about what we should expect within the next few months, which the doctor said he would see us in three months for a scan unless there were any concerns before that. At that time, they would remove the broviac because I would hopefully no longer be needing it. I would continue to return every three months until the one year mark, and then every six months for a couple of years, and then every year up to five years from the last treatment. At this time, the term “cure” would be assigned if there was no reoccurrence or chance of reoccurrence. Wow, so this was not going away for a long time for me. But I would not be returning at this time for any more treatments. We were really excited with the prognosis.

We also discussed my body and the side effects of the chemotherapy long term. Two of the drugs were known to cause infertility and the fact that I had one ovary removed because of the cancer, I should realize that having a family might be difficult when the time came. I thought about that discussion, and it bothered me, but I also thought that having a family would pass on my cells that were at one time cancerous. I would later come to a conclusion that I would never want to bring a child into this world and have to have them go through what I went through. No way, no how. It did not seem logical or kind to do such a thing to someone. But I was not fully trusting in God with that frame of mind. My future was still quite blurry; like most people.

Philippians 1:6 tells us that we can be confident in the gospel, Christ, who has begun a good work in us and will perform it until He comes back. My confidence may have been in things outside of Christ, like trying to live a normal life going through cancer treatments, but that confidence always fell back on the fact that God gave me that life to live. I realized I could have died and God saved me. I realized that I could not do this, and wanted to quit, but God gave me new medicines. I realized that the cancer might be back one month before the last chemotherapy, but God was just checking out our confidence in Him. All the bumps in the road got me to this last chemotherapy with a fully renewed life and trust in my God who actually brought me to this last chemotherapy.

The Roller Coaster

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1/14/19

Summer 1991

How could the adventures within the last few months have been so amazing and actually occurred while I was on treatments for a disease that takes lives every day? It was a pretty wonderful experience. And, yet we had to return to reality that I was on treatments for a… Yes, reality hit me right in the face, right back to Salt Lake City and chemotherapy. It was the summer months again, so we were able to head down early to treatments and enjoy fun times at large area parks, shopping, and there was even a small amusement park in a nearby suburb with roller coasters.

We had to go early in the morning, because there was absolutely no chance we could enjoy anything afterwards. Chemotherapy hit me pretty hard, and if it was the one with a spinal tap, I was in worse shape. Salt Lake was eighty miles away from home, so we would prepare for a rough ride home, because when you leave the city, you climb up through a canyon. It is a major interstate, but it winds back and forth up the mountain and then straightens out after twenty miles or so. There was also another back and forth halfway between there and home. Car sickness is no comparison to chemo, but when you combine the two, not the best situation. Sorry Utah, I really did try to make it without stopping! Even though the trip was hard, we were so grateful to be as close as we were to an amazing hospital.

This was our second summer traveling back and forth for chemo. My prognosis was fantastic, no signs of any cancer since the doctors closed up my stomach, gave me a 30% chance to leave the hospital, and started me on chemotherapy the next day. We had another set of scans right between the two big trips, and they came back clear again. The last treatment would be sometime in October if my blood counts stayed good, and the doctors did not have to bump me back a week. My heart was staying under control with the medicine, and there would be an evaluation after chemo was over on the next step to get me off the medicine. I was healthy, happy, and enjoying my teen life. I just got my permit on my birthday, and school was about to start. I would be going into my third year of school on these treatments: spring of eighth to, Lord willing, fall of tenth grade. The end could not get here fast enough. I wanted to be a normal high school student. One brother was entering high school with me, and the other was going into first grade. Our church was doing really well. My parents had reached out to co-workers who had joined the church body, and the youth group was growing. I had some very special friends during this time at school and church that made my world go round. We had some amazing fun times together!

Yet, I started to struggle with some unusual symptoms that needed immediate attention. We headed down to the hospital to do a series of scans. Concerns about a recurrence were prominent. The scans were a disaster to get completed. I kept throwing up the barium, and they would have to start over. My mom finally told them to shove a tube down my nose and then we could pour straight into the stomach. It worked, and we were able to finish, and head back to the treatment room. For three hours, no one told us anything. It was very unusual to wait and not be given any information. We were certain the cancer was back, and mom and I were physically sick. Mom had made arrangements for being out of the office for an uncertain amount of time and made phone calls to the insurance company. After an excruciating amount of time, the doctor came in to tell us we would need to come back in the morning for more scans. We desperately needed him to tell us what the scans said, and he informed us they were clear, but they needed further tests to figure out why I was sick. The emotional down that we had experienced for the last few hours was almost unbearable. My life was hanging on by a rope, and no one informed us it really was not. Situations like this are a par for the course in the medical world. They did not do anything wrong; they have hundreds of patients and dozens in a given day that need attention, cry for attention, need a hand to get through some of the most difficult times in their lives. Hats off to the medical profession. Emotional roller coasters are in everyone’s handbook. Theirs just has to be under control and then make life changing decisions for other people.

But, boy, do I love the real deal roller coasters. I am on the petite side, and I did not get to enjoy coasters when I was younger until later than most because I could never reach that silly mark on the sign. Pretty sure my brother beat me to it. We were fourteen months apart, and because I was smaller, we were very similar in height. When I was three, the scissors and hair became one, and my mom and I did not. She had to take me to a barber to get it fixed, and I walked out looking like my brother. She had questions about her twin boys for a few months, so she made sure she put me in dresses as often as possible. Anyway, after much begging, pleading, and tiptoeing, I was able to get on that first roller coaster at Six Flags Over Texas. On the way up, I knew this was the wrong idea, and my aunt had to keep me from jumping out. I swore off coasters until I was in junior high and fell in love with them. They do not scare me at all; granted I am nervous on the big ones. Back and neck problems have changed my ability to ride them in this stage of life, but I miss the fun.

Life, emotions, etc… are roller coasters and winding roads through mountains, no doubt. Things are great, things are not so great, things are good, things are horrible, things are fantastic. When asked how things are going, I catch myself saying great.. wonderful… fantastic… no matter what is actually going on most of the time because I have been through some really, really bad times in my life. In comparison, things are really great. There may be times that are crazy, there may be times that are not so wonderful, I wear those on my face and people can tell. That is o.k.; it is life. God’s Word in Ecclesiastes 3:1-2 says it this way: “To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted.” Verse 4 says, “A time to weep, and a time to laugh; a time to mourn, and time to dance.” Winding through life has its times, and we know that our God will take those times and show us His love and strength and power. Hallelujah for the times we have!

Only God Can Do That

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11/27/18

Winter 1990 and 1991

Mint chocolate chip or peanut butter? Pepperoni or cheese? Wood or painted? SUV or sedan? Right and wrong? Choices are constantly in our lives and sometimes staring us in the face asking for us to make a decision that instant. What do we do for those major decisions? Pray and seek counsel from those around us that have most likely been faced with something similar. The little choices do not seem as important but can really change some things in our lives depending on what choice we make.

I was up against choices that changed my life forever. Since cancer had already done that, it was my turn. My dad and I were driving out toward the house, and he asked me a question that rocked my world. Had I thought about dying? Because he had known from his point of view that I had been at death’s door. Of course not! It did not even cross my mind at all. My only thoughts about cancer were that it was the worst thing that ever happened to me; I hated every minute of the fact I could not be a normal teenager, and stupid chemo made me lose my hair! No reason to talk about dying because I was going to be done with chemotherapy in less than a year and so long cancer.

I did not admit it, but his question scared me, and I spent the next few weeks in anguish. You see, when I was five, I knelt at a chair with my aunt and prayed the sinner’s prayer, but during elementary school I went to a Christian school and my teachers would always talk about where we would go if we were to die. I remember getting the opportunity to pray a couple of times on my knees near the chalkboard, and each time I asked God to save me if I was not saved. I knew I was not 100% sure if I had not woken up from surgery that I would have gone to Heaven. On January 5, 1991, I accepted the Lord as my Savior and felt a relief beyond all measure. I also felt like maybe things were getting better for me as a person.

That changed quickly. Around March, I had had enough of doctors, chemo, heart problems and the world. School was pretty difficult, and my headaches were unbearable. Nothing seemed to even scrape the surface and give me any relief. My heart condition was getting extremely out of control. I could not stop it right away, and it made me a nervous wreck. Throwing up for 24 hours was the last straw. I was so totally and absolutely done with puking. So I was walking into another chemo hoping for a low blood count so I could go home. When the doctor came in and said the counts were good, I made a choice to leave. I told my mom I was done, I was not going to do chemo, and I did not care if I died. This awful, this horrible disease was destroying my spirit and my wherewithal to live.

I got up and tried to get out of the room. But mom stood between me and the door and told me that I was not leaving, we were going to stick with this. Through tears and sobbing from both of us, we had a verbal and mental struggle with each other, and me with the devil because I was not going to stay there. Our memories of the day are a little different, but we both know God took control of it from that point. I sat back down on the bed, and mom kept telling me we were going to beat this thing; we had come this far and had six months left. Literally, within minutes the cardiologist stopped in and asked us to come over and discuss a new drug that came out for my condition. It was taking control of the rapid heartbeats, and patients were seeing improvement in the number of episodes a person was experiencing. He said our only other option was open heart surgery, and my body could not survive that on cancer treatments. Right after we returned from the cardiologist, the oncologist came in and said they were ready for the spinal tap, and by the way, a nausea medicine that helped with the length of time a chemo patient threw up just made its way to the department. I would be the first to try it out if I was interested. We said we definitely would try it out.

In less than an hour my choice to leave, my mom’s strong and convincing words to stay, and my choice to stay changed the next six months of my life. Both drugs really did just what we were told they would do. If I remember right, I did not have another heart episode during that period of time, and my nausea stopped at the twelve-hour mark. We said then and say now, only God can and did do that. Just like my God gave me a clear scan and blood work from three-month post diagnosis until now, thirty-three years later; only God can do that.

Stories like this could not possibly be true, but I am a living testament that they are. God showed Himself to us so strong and powerful, there was no question in our minds and thousands of others that have heard the story. It was He who did it. Why do I forget that miracle in my life? Why do I go through things right now and struggle to see God working? Where is my focus? I submit that it is not on God but on myself and the difficult situation I am in. I try hard to remember where God has brought me from and what He has done in my life. Little things like not complaining about a bad hair day are at the forefront of mind, and the reason why should be, too.

God is so good to me, and I am truly, truly blessed to be able to say that only God could do that.

The Heart of the Matter

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11/20/18

Summer/Fall 1990

Nervous, to say the least. It was my three month checkup and although I would come to appreciate these scans more so later on, I had in my mind they were no big deal right now. The pink stuff threatened to destroy my life again, and we realized after this endeavor, we would get further along in the scan process if they just shoved a tube down my nose and shoveled it into my stomach. Not as much groaning and moaning and whining and refusing to drink the stuff that way, and it went in hours faster. Seriously.

Three month scan report and blood work: 100% clear! Not one spot or lymph node or any sign of cancer in my body. It was an absolute miracle, and the oncologists basically said the same thing. We knew it was and why and how. Each and every time we returned for scans throughout the months and years, we received the exact same results from the doctor. But every time I was still very nervous.

Another reason to be nervous. I was embarking on a new journey; entering the big doors of the only high school in the area. The two story building was set up on a hill right behind one of the two grocery stores in town. It was a rectangular shape with the freshmen lockers at one end next to the choir and band rooms and the gym. About 3/4 of the way down the hallway toward the other end was the entrance, commons area downstairs, and cafeteria upstairs. Then the classrooms began. We were able to get our lockers and check out the classrooms on our schedule before school started, and I figured that I might have to run if I ever had to go back to my locker. I did my fair share of that throughout the year.

My schedule consisted of all the regular classes, but I did not have to take P.E. because if for any reason the broviac was hit or dislodged, I could have serious problems. I would be an aide that hour, plus I would be taking Spanish and Choir as my electives. I was also taking Algebra II which ended up being with a few friends from middle school and a boatload of upper classmen, mainly Juniors and Seniors. I would soon dread going to this class; not because of the workload.

Like I said earlier, we had one high school in the area which brought all the freshmen into one building. Everyone from my middle school knew my situation, maybe not the fact that I wore a wig, but had an idea why I would leave during class and be gone the next day. After a couple of months, I started getting questions from the other students, so I would give them a short answer that I was going to the doctor because I was sick. I had a hard time talking about it so I just left it at that. The math class was hard because at one point I saw a couple of upper classmen point at my hair and laugh. I dreaded going in there from that point on, but I decided to move to the other side of the room and ignore it. I was just being sensitive, but when mom asked if I would like a new wig, I said yes. We picked one out that was longer and a different color and made plans to change them out at Christmas. The questions were non-stop that first day back in January. I told everyone that I colored my hair and got extensions! It worked, but I was not going to change my style again.

My health was really good. I had the occasional low blood counts, which caused a rejoicing in my heart because I did not have to have chemo. I think that only happened three times in the 18 month time period. Amazing to say the least. To go to school full time and hang out with friends at church, it is crazy that I did not have more times where they would send us home.

Even though my body stayed strong, I did struggle with a couple of issues that would not go away. I was having severe headaches. I would be in class in the middle of the day, and it was all I could do to keep my head up. After a visit or two with the school nurse, she suggested that I come down and lay in the nurses station anytime my headaches were unbearable. She spoke with my mom and sent out a note to all my teachers to let them know. I did not want to miss class, so I fought through them as much as possible. We asked the doctors at our visits and no one really had any explanation. I even had an MRI to see if there was cancer in the brain, but that came out negative, which was a huge relief. Mom and I concluded that it had to be the spinal taps because I have never had any headaches like that since chemotherapy.

The second issue I was having was with my heart. When I was young, I was diagnosed with a heart problem called SVT, Tachycardia, an irregular heartbeat. When I would have an episode it would trigger the heart to start beating extremely fast, up to 250 to 300 times a minute. When I was little I remember my parents rushing me to the hospital, and I would have to put my face in cold water or some other quick reaction that would trigger the heart to reset and go back to normal. The doctors had medicines that would go in an IV that would stop the heart, but that was always a last resort. If too much time passed, I could go into cardiac arrest so getting it to resolve was super important.

As I got older, I was able to control the beats by jumping up and down or doing a cartwheel or holding my breath. At this time in my cancer treatments, the situation was not so easy. Chemotherapy had intensified the amount of episodes I was having, and it was also preventing my regular ritual from halting the fast pace beat. I started seeing a cardiologist at Primary the day I was admitted for the tumor because they had to keep an eye on my heart during the surgery. We visited with him a couple of times the first few months, but as the intensity of the episodes increased, we met with him each month.

I was going through a hard time in the midst of a hard time, and I was at a real crossroads in my journey. Physically, emotionally, and spiritually I was about to take a hard turn in a different direction.

God has not given us a Bible filled with many stories of wonderful things that happened in history. He has given us His Word filled with many stories of wonderful things and difficult things and exciting things and devastating things and life and death. Just like our lives now. God mentions many times that there will be tribulations and trials in our present world, but He will be with us. John 16:33 says, “These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.”

A Dreaded Routine

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11/13/18

Summer 1990

Routine: “A sequence of actions, regularly followed; a fixed program.” Merriam-Webster. Why in the world do we have to classify doctor’s appointments, chemotherapy, spinal taps, and throwing up for 24 hours a routine? Basically, a fight against cancer puts you in a routine you never imagined existed. We began to plan things around this routine. Salt Lake was such a big city compared to our town, so since it was summer time we would go shopping or sightseeing before we headed to the hospital. We were down there once a month so it was a little adventure. But then we would have to get in the car and drive to the hospital.

By this time we were going to the new hospital on the edge of town closest to where we lived. Salt Lake City is a large city and very spread out in the valley. From Evanston, we would hit the eastern side of the city first, right out of the winding, steep descent from Park City, and then travel a few miles north along the foothills. The large, new and beautiful Primary Children’s Hospital was such an upgrade from the older hospital with shiny floor-to-ceiling glass windows and multicolored murals on the walls. I remember some of the walls were made out of glass blocks to let in more light. It really was a nice place to go, even if the inside was filled with pain. I really dreaded this place. We were always greeted by a nice nurse who would do the routine weight, height, and blood draw from my broviac to test my white blood count. They would then deposit us in a pretty sterile room with colorful pictures.

Guess who comes in next? This cute little nutritionist; I can still see her smiling face if only it was on there for a minute or two. She would measure the fat on my arm and ask me how I was doing. She would then proceed to ask me what I had to eat that day, and then ask me if I was eating my fruit and vegetables at home because she was not happy with my food of choice before coming in. Did you ever have to sit at the table when you were younger until all your food was gone? I did, and the only thing left on my plate would be vegetables. I would sit there for a while until I could get up the gumption to get those things in my mouth without gagging them back up. As a teenager, it was not that bad, but my food of choice was never a vegetable. The nutritionist told us the very same thing visit after visit about how important it was for me and my health to be drinking lots and lots of water and eating “green leafy vegetables because they have so many nutrients for your body.” It was always followed with, “Broccoli and cauliflower are full of cancer fighting properties…” She would get me at broccoli. Nope, not going to have it. I could handle peas, green beans, corn, but come on, broccoli. If I heard that once, I heard it eighteen times; guaranteed. She was absolutely a saint and truly cared about me, and I really did try to listen to her words. Mom did too, and always had them available at the dinner table.

After she left, the doctor would stop in to tell me we were on schedule with the chemo because my counts were good. That was all it took for my spirit to fall to its lowest; like a weight had just been dropped on me. I knew once I got up off this bed I would have to walk down the hall to another room with another very flat bed with crinkly white paper. There were a few monitors in there and always a couple of nurses. I would have a spinal tap, and if they had not done so already, they would hook me up to fluid to get my body working to flush out everything. That is why the nutritionist wanted me to be drinking water. The quicker the chemo is flushed out of the body doing its job along the way, the quicker the recovery afterwards. After the horrible spinal tap, we would start the two hour chemo drip. Sometimes the nausea would start as soon as I would walk in the spinal room. The smell would get me going. Other times, I would not start throwing up until we hit the road or even at home. But nonetheless I would spend the next 24 hours in that state.

Although I would trade anyone, any day for anything but cancer, I embraced this routine for another chance at life. I may not have changed my eating habits to include the vegetables I needed; I actually stuck with tacos and burgers and chicken strips, I really did whatever it took to get better. I worked extra hard and said to myself, “You are strong, and this will be over soon.” This routine became my life. But my strongest routine should have included God. Each and every day He wants to spend time with us, and we should with Him as well. A popular chorus and verse says it perfectly. Matthew 6:33, “But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you.” He will bless us spiritually, mentally, emotionally, and physically. We just need to seek Him.

A, B, C, D, E, F, G …

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10/29/18

March 29, 1990

I mentioned in an earlier post that God orchestrated our path and moved us to a remote town in Wyoming. This state has less than 600,000 people, and its largest town has 63,000 people. Our little town had 10,000 at the time which puts it in the top ten cities in population, and it is located on a major cross country interstate, I-80. Why all of the statistics? Remote, desolate, long winters, no family, but we were 80 miles away from one of the top tier children’s hospitals in the United States, located a few miles north of I-80 in Salt Lake City. Only God knows. If there was any questions of why we moved eighteen months earlier, they were answered.

I was sitting in the hospital in Evanston after the doctor came in and told us I had a bowel obstruction. Dad, with my eldest brother, had left around this time because he had won the city spelling bee and was headed to regionals. Still amazes me that he did so well in the midst of this family situation, but he was a strong student. We had started months before my diagnosis drilling him on a nightly basis with words from the dictionary. He was crazy good at it.

The next step for mom and I; a trip back down to Salt Lake City. The bowel obstruction must resolve, or I was going to have to have surgery. Since I just came from there, the doctors in both locations decided if surgery was the outcome, then I should be back at Primary. They loaded me up in an ambulance because the hospital cannot release me with this kind of diagnosis, and we hit the road to the hospital. This was super surreal. I had experienced a couple of medical issues as a kid. One was a tonsillectomy at three, a broken collarbone from a tree swing made out of a sheet that was not quite tight enough, and the last one was an irregular heartbeat. The heart issue I will touch on later.

I was in the ambulance, and out of the back I could see us leaving town and driving past our church and home because they were on the service road of the interstate. I was so disappointed that I was leaving home again and wondered how long I would be gone. Home seemed like a haven for me, normalcy that I wanted to experience away from the doctors, nurses, needles, smells, etc… I just wanted this all to go away, but I knew something was really wrong with me at the moment. We passed by familiar landmarks that I had seen in the past, but when I was facing the other way in a car. It was almost like I was seeing them for the last time, and I could not understand why. Swirling around my thoughts and feelings, the siren of the ambulance gave me an eerie feeling that all this new stuff that was a part of my life now was no joke. Not going anywhere; not going to be pushed aside for homework, shopping, hanging out with friends, playing volleyball, and even sleeping in my own bed in my own room in my own home with MY family nearby. No, this was all here to stay.

I determined in that ambulance ride that no matter how hard cancer was going to hit me, that I was going to hit back harder. I was going to do whatever it took to “get better.” I physically was going to be as strong as possible and push myself to fight this. I told myself that this was going to be the last time I was going to go to the hospital. I knew God was real and with us, and I cried out to him to take it all away. But on the other side of the coin was the reality that I was super sick at that very moment.

When we arrived at the Salt Lake hospital, they admitted me and shoved a horrible tube down my nose and into my stomach. This NG tube would pump my stomach and relieve abdominal swelling. An enema is administered as well to see if the bowel will release itself. If this does not work, then surgery is about the only option. All my doctors came by to figure this out, because I would not survive a surgery. The incision site was not healing from the lack of white blood cells affected by the chemo, so most likely my body would not survive if surgery was decided on. Mom basically begged them to wait; we were going to pray for a miracle. And we did.

Within two days the obstruction resolved, and the doctors felt like I was in the clear. They administered the second round of chemotherapy I was supposed to receive back home, and after a few more days I was released. Almighty God healed me! And through the doctors’ knowledge, discussions, and procedures for this type of health scare, I was on the mend, inside and outside. My incision was taken care of by the medical staff and there was no other cause for concern. I was definitely placed in the hospital at the right time for there might have been some serious scarring involved that I would have dealt with in the future.

Each of these intermittent rays of sunshine within about a week changed so much of our dark cancer world. It gave us a massive pick-me-up, that for the last month, had been almost non-existent. It was now time to go home! I was more than excited, but I saw just a hint of something on my pillow that was beginning to concern me. Please, don’t tell me it was happening; if I ignore it, it will go away.

A, B, C, D, E, F, G… Words are built and given life by individual letters that come together. Once the word has been given life, it can be used alone like “Hi” or put together to make sentences to communicate. So much of our life is the same as a letter. There are times that the experience is put together and creates a small caveat in our world depending on how we observe it. Or the experience is placed with other experiences, and they come together and make a massive crater. Letters, they can change our lives; experiences they move our world. And God is the hand that holds us tight in and out of the caveats and craters. Isaiah 41:10 “Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.”

What Is Happening Right Now?

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10/23/18

March 23, 1990

“It looks like we are going to send you home. You are tolerating the chemotherapy, you are keeping solids down, your bowels are functioning again after surgery, and you are moving around better.” Those doctor’s words were wonderful music to our ears! The other music had been screeching in our ears for two weeks, and we desperately needed a new genre. Constant beeping from the IV pole and the heart monitor, people talking in the halls, and the blood pressure machine every couple of hours. None of the milestones mentioned in the first line were expectations of the doctors when this all began. But God said otherwise.

Hospital stays are so difficult, or maybe it is just me.  At the beginning, I was started on a liquid diet for a few days and lost quite a bit of weight. When Jello was allowed, there was orange, green, and yellow, but I really wanted to have red. Do you know the hospital did not make red Jello? After a couple of days, it appeared on my food tray, and I was absolutely ecstatic! They had made it just for me. After a few days, I began to feel better, and they started weaning me off of pain medication. I was more aware of my surroundings and sleeping less. I really wanted to go home.

By the time we received those joyous words that we were going home, I had received a chemotherapy drip, with the second one scheduled to be administered at my pediatrician’s office in a few days. Two different drips were on my eighteen-month protocol. One drip was two hours and would later be the one that I dreaded. It was associated with the spinal tap, and both of them combined would make me extremely sick. The other drip was four hours long and did not seem to hit me as hard. At any rate, I tolerated them at the hospital, which was a good sign for the doctors. We received tremendous care, and we all understood we would be seeing each other for months to come.

Being home was rejuvenating, but I spent more time sleeping than anything. I was about seventy pounds and pretty weak. It was nice to be around my dad and brothers again. A new group of people to draw strength from. They were a big help, and we settled into just working at getting me strong again. My mom headed back to work to catch up, and the boys continued to go to school. Things changed quickly though. Within a week, I was writhing in pain. Mom made calls to the doctor, and dad loaded me up in the car for a trip to the hospital.

As I mentioned before, Wyoming has winter. This was the first of April, and we had received a snowstorm. On our way to the hospital, dad hit black ice, and the van spun around, flipped, and landed on the passenger side on an embankment. I was in the front passenger seat and remember looking up and seeing my dad hanging from his seatbelt. We were alive, but in a very precarious situation. Dad told me to crawl on the window over the seat, and then I could unbuckle him. By this time, a man driving by had stopped and was talking to us from outside. He and dad decided to see if the back hatch would open up, and we crawled out. I had hurt my leg, maybe when we had landed on that side, so they carried me to his truck. He drove us to our original destination, the hospital, and they started to check on me. I kept saying that my dad was in the wreck, too, and I wanted them to make sure he was fine. Thankfully, we were both injury free.

There was more of situation with the reason we were coming to the hospital. The abdominal pain was excruciating, and my incision was started to come apart. After testing, it came back that I had a bowel obstruction which is a complication from the surgery. Also, the incision was not healing because of the chemotherapy interference. It lowers the white blood cells which are supposed to help in the healing process, and it is possible I had attracted some kind of infection.

I was about to hit rock bottom, and I am pretty sure my family was about to hit the superhero status. I Corinthians 10:13 says “There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.” How can one verse say so much about our God, our Christian lives, and the trials that come our way?

 

The View From the Mountaintop

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10/13/18

3/15/1990

Even if you have no desire to embrace the cancer world, it does not take very long before it embraces you, and your family is plunged head first into a new life. The doctors showed us how much they cared about what was happening to us, and yet pushed my parents forward on decisions that needed to be made immediately. Once we got past the diagnosis and had a protocol in place, we hit the ground running.

I started chemotherapy the day after surgery and also had my first spinal tap. What an ordeal. They made me get in the tightest fetal position I could on my side so they could remove spinal fluid to make sure there was not cancer there, and then they replaced it with chemotherapy. If they did not replace it, I would get a massive headache they told us. Memories of a spinal tap make my stomach turn, and I feel nauseous because I can remember the gurgling sensation at the base of my skull and the cool sensation from the chemo. It is very much like an epidural administered when having a baby. Needless to say, the first tap was a hard one, because I had a gigantic incision on my stomach and sites on my hips from the bone marrow extraction. I was still on quite a bit of pain medication which was helpful but obviously not enough.

The first chemotherapy was uneventful. They administered the drip through an IV that was attached to a crazy apparatus that came out of the middle of my chest. It was basically an IV that had a needle insertion site, and it went up under my skin toward my collarbone and then down into my heart. This would allow the heart to pump the chemo to my body quickly. I really had no affects right away even though they told me about vomiting and hair loss. After a couple of days, I remember thinking that maybe I would not lose my hair; that was pretty important to me.

I was moved from ICU to a regular room. The hospital was really crowded so each room had two kiddos. We were reminded that the new hospital would be opening soon. You could tell the nurses were very excited about it. They did their best to make me comfortable, trying to get me to walk; I refused. Mom recalls that they decided to tell me I had to move rooms, but I would have to walk there. It worked, once I had to walk, I was confident that my stomach was not going to fall out and land on the floor. I still held a pillow on my belly for weeks. My scar was so giant, I kept thinking it looked like I was a gutted deer.

We would end up staying about two weeks in the hospital. The doctors wanted to watch my reactions to the chemo and make sure I was healing well, but mainly they really did not think I would leave. Of course, I was not aware of this; that was my only goal – TO leave. My mom was my rock during this time, comforting me in the pain and making me feel like I could keep moving forward. She was spent physically and emotionally, but never showed me or told me that she had had a fainting spell one morning. After a few days in the hospital, she came down with a migraine which caused a seizure where they had to take her to the regular hospital. That was scary for both of us. She did not want to leave me, and I did not want her to go.

My grandparents came up toward the end of our two weeks, and my grandmother gave my mom a break. Mom was able to go across the street to a room the hospital provided, and dad and mom were able to go for her birthday dinner one evening. As I mentioned before, we had many friends and visitors come by and spend time showing us how much they cared about what we were going through. The cards poured in. The school sent large butcher paper posters with encouraging comments from the whole student body. Churches all over the country sent envelopes filled with cards and notes from church members that we had never met. They cared about us still. They prayed for us still. It did not take much time to realize how important other people meant to us. God’s Word tells us He is our strength in times of trouble, and He hears prayers. Isaiah 40:29 tells us, “He gives strength to the weary and increases the power of the weak.” Psalm 66:20 says “Blessed be God, which hath not turned away my prayer, nor his mercy from me.” I know we as a family were living these verses.

Praying is like climbing a mountain. To climb a mountain, we look ahead and map our course not really knowing how hard it will be or even what the outcome will be. There is hope, right, that we can make it even when it gets hard, and we will get to see the amazing view from the top. And the view at the top is really hard to describe unless a person has seen it. When we pray, we have hope that God will map our course, show us where to go and know that no matter the outcome, we will be able to see the amazing view from the top.

I Am Not Sick

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10/7/18

3/15/90

In the faint distance I can hear myself yelling, but nothing is coming out of my mouth. Or was it? Inside I know I am yelling, and all I want to do is tell someone I am in so much pain. What is going on? Why is no one helping me? And then the yell comes out of my mouth, and I can hear someone tell me it is going to be ok. Be still, calm down, you are just waking up from surgery. But I am in so much pain; how can you tell me to calm down?

Waking up in the recovery room after surgery was a very strong memory. I could hear so many different noises; people talking, machines beeping, oxygen flowing, my own voice… And I could remember smells of antiseptic, Beda dine, rubbing alcohol… I was truly scared and was being picked up by the sheet under me and placed onto another bed. They pushed me through doors into ICU. Faint memories as I was in and out of consciousness were later filled in by my parents as they shared with me what transpired. I was very upset most of the time, mainly because I was in so much pain. At one point, I remember hearing my mom talking to the doctor, and she asked him how she was suppose to tell me I had cancer. My immediate thoughts were: What? They told us they were going to take this tumor out, and I was going home. This was not supposed to be happening.

Cancer?

That is so bad. I asked my mom if it was cancer, and she said yes. All I could do was cry, but did I really know what that meant? I fell back to sleep. Hours passed, and each time I woke up, I was more aware of my surroundings. The oncology doctor came in and greeted us with an amazingly kind and caring face. He made this crazy situation one that seemed not so crazy. He brought the comfort to the room. After a couple of days, we had a serious talk. He shared with us that I had Non-Hodgkin’s Lymphoma, and we would start a chemotherapy treatment the next day, then every two weeks for 18 months. Along with the chemo treatments they would do a spinal tap each month. My parents had already been given this information and what would be happening. It was my turn to hear it.

Later on my parents shared with me what went on while I was in surgery. During surgery, the doctor had reported to them that I had a tumor from my diaphragm down that covered my entire abdomen. He could not remove any of it because of the large amount of cancer and its proximity to the organs. One ovary was removed, which was used for the biopsy. This was the lump I felt that my mom and I had discussed a couple of weeks before. They had also done a bone marrow test, which is one of the main reasons I was in so much pain, and they had inserted a broviac line, an IV tube that came out of my chest for administering chemo drugs. My body was all riddled with stitches. When everything was done, I had an eighteen-inch-long incision down the middle of my stomach, and the cancer closed back in underneath it.

I was also connected to every hospital tube known to man and not a happy camper. It was extremely difficult for me to accept this whole ordeal. Mainly because I was healthy at the beginning of the week, so how could all of this be necessary? This silent killer called cancer was literally holding my life in the balance, and I did not realize my odds were not so good. I really just wanted to get out of there. In the next few days, my dad returned home to be with my brothers and brought them up to see us. My closest friend that I had met the first day in the new school in the new town, spent hours with me. She rallied the kids at school, and we also had many of them drive the 80 miles down and visit with us. Our wonderful church family and local pastors came up to spend time with my parents. The support we received was overwhelming. The hospital room filled to capacity with flowers, stuffed animals, balloons, large posters, and cards. The prayers filled in any space that was left.

II Timothy 1:7 “For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.” This verse refers to a believer and their ability to share Christ with others. We have been given power and love and a sound mind so we can share with others that God loves and wants each person to accept His Son to be their Savior. But this verse is also an encouragement to the believer in other ways. Fear is definitely an emotion that comes with cancer. Maybe it is the fear of what is going to happen next after what just unexpectedly happened last. With cancer there is never a plan that goes as planned; there is just a plan that goes. But God has a plan and sees that fear and brings a multitude of people with a multitude of loving hearts that bring before Him a multitude of prayers.