Tag Archives: how tumors affect your body

Solid Grip

Normally when I accidently drop a medicine on the floor, one of my family will hear it land and come quickly to the rescue. No one saw or heard me drop a pill tonight, and instead of asking for help, I tried to pick it up myself.

I don’t say coincidence, but my dropping of pills is always the same two and they never seem to end in causing me troubles: the first is skinny, yet cylinder shaped, and has the smooth outer wax-looking covering making it slippery for my numb fingers; and the second pill, well, it just so happens to be the exact same color as the wooden floor and when it drops–it’s transparent. It’s a daunting task to find this pill, and when I do, it is usually if I tip my head at very awkward angles or the lights suddenly reflect a shiny stud on the floor. I take both these pills twice a day…some days, like today, are just aggravating!

When I dropped the former of the pills this morning, I was alone. I tried with no success to pick it up with my fingers, but after a few minutes, resulted in grabbing a spoon from the drawer and pushing the pill into the middle of the utensil. Pulling myself back into standing position, balancing the pill on the spoon had me feeling as if it was a raw egg. 🙂 The spoon-retrieving-medicine was a success, so when the pill dropped again tonight, I started the same process, except this time first asking Marcia for a spoon. It was then Dad realized what I was doing and came to the rescue.

It must not have been my day for medicine, because shortly after this I set out to refill my day caps for the coming week. When I got to the latter of my two trouble-making pills, I didn’t drop just one…but two, as they slid out of my hands. I did the usual awkward angle head positions and found one, but as I gently swept it closer to me in order to pick it up without falling off my chair, it speeds away and goes back into transparency. It’s then that I let out a disgusted, frustrated: “UGH. Good grief!!” Mom came to the rescue and found both.

I had one more refill, but in this case, the pill is never the problem–the bottle cap is the problem. It is one of those “squeeze the cap on the sides while you turn the bottle,” and I normally don’t bother to try anymore with opening it. I can’t remember the last time I opened a bottle like this normal…it has to be a few years; the atrophy in my thumb muscles played a role in this long before numbness was a problem. My hand format consists of placing the bottle in my left hand–one of the “push here” spots rests against the bone of the thumb that stands out since the atrophy; and the other “push here” spot, I place my pointer/index finger and squeeze as hard as I can, while twisting the bottle with my right hand. It never started to become a major problem until the numbness increased.

Maybe it was my frustration of medicines today, but as I tried to open it, instead of giving up right away, I set out to try something else. I unsuccessfully tried using a pair of needle-nose pliers, but in this attempt I noted that most of my problem was not the “push and twist” of the cap, but my holding the bottle firm in the right hand. So, I found the non-slip rubber jar opener pad in another drawer and just tried again to see if I could open the medicine bottle.

It was not easy, even with the assistance…but after a few more big squeezes and strains, the bottle opened. And I cried. In that moment I felt victorious. I should see the same in life…that even the most difficult days are worth living, because I am held firm in God’s hand.

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Mrs. Dash

In the classic Christmas song, “Rudolf, The Red-Nosed Reindeer,” the first of Santa’s reindeer mentioned is Dasher. You must be thinking, “Mel, we are past the holidays! It is a new year already!” That is exactly my point…the new year took off with a dash! 🙂 We kicked off the year by picking up my sister and brother-in-law from the airport…and with all family members and spouses present, we enjoyed a nice meal at the Spaghetti Warehouse in Dayton, then came home to celebrate Christmas.

Yep, January 1, 2014 was a fantastic day and the beginning of a week filled with fun! We played games, shared memories and had good laughs, took loads of pictures, drank almost all the hot chocolate in the cupboard, played more games, “owl family” late nights resulting in late mornings and breakfast times, and took a short road trip to the Creation Museum in Petersburg, KY. 🙂

At the Creation Museum, there was a small room on the lower level called, “Dr. Crawley’s Insectorium.” Now, if you know me, I am not a bug, insect or spider sort of person. Snakes I can handle if they slither slowly, but insects…yuck! However, because we were there, I wanted to get the whole museum experience. Besides, these insects were dead, so what was the harm in viewing them? The first of the display boxes contained locust, crickets and katydids. The plaque described how they form “God’s choir,” as they make beautiful chirping noises when using their mating calls to attract females.

I thought a few things were interesting: a) A female of the three insect species listed has to listen and distinguish among the chirps which mating call is for her and then respond; b) Out of all bugs and insects, only these three are listed for their beautiful noise; and c) The plaque also mentioned reference to prophets in the Bible, one being John the Baptist, and their eating locust. I didn’t think much about the eating part until the end of the museum tour and day, in which Mom, my brother-in-law and myself, found ourselves finished a half hour before everyone else. With nothing else to see, we went to the bookstore to look around and wait.

My choice of two post cards placed me over at the cash register and after I paid, I see at the side the selection of chocolates (not having anything to do with the museum…just a treat!) and other candies. Of course, the suckers with bugs in them would not my choice of a tasty treat. Under the candies was a shelf that had little boxes of flavored locust, but I didn’t actually realize they were real locust until I picked up the sea salt flavor and read the cover. Tempted, I almost purchased the sour cream & onion flavor, but right when I decided “no” in my mind, the store closed and we left. So much for starting the year off in a bold fashion. 😉 It may have had too much salt anyway…

Right before the new year, Dad and I discussed my left ankle. It has been swollen for quite sometime. When I sit, I don’t always prop up my feet, which doesn’t help any, but the fact is that I needed to try something new. I already deal with osteoporosis and numbness (which I have no control over), but the swelling I could try to bring down. The simple word: salt. Oh how I just love salt! So being told, “No salt,” was a sad experience at first, because I literally thought I could not have any. I was reassured that I can still have salt. If you think about it, salt is unavoidable-it is in everything! It is not a diet or new year’s resolution, but my new restriction was simply that I just can’t add salt to my plate and must practice self-control.

The tumor on my 5th nerve affected my sense of smell, which affects your taste. It has to be a very strong flavor or scent in order for me to smell and/or taste it. Every so often, I will get a giant “smell-wave” for a split second and it literally will take me by surprise. If anyone is around, they hear about it! With tasting food it is different. The typical routine is usually putting on a lot of salt and pepper just for a taste. Without salt, foods like vegetables can be pretty bland. That is where Mom suggested the substitute, Mrs. Dash. It is salt free and has a bold flavor!

Limiting my salt seems to be rewarding, as I have noticed the swelling decreasing. The whole experience has also got me to thinking of my own life. I have been out of my typical morning routine, coffee and readings, which I see is starting to result in becoming a spiritual life that is bland. I still have salt–but like my food restriction, I am not adding any to my life–not seeking the boldness that God intends…and I feel no purpose. It is the new year, and I seem lost. Praise God–He is bigger than my fears, bigger than my failures, bigger than my future here on earth.

He is like Salt–Unavoidable; In Him, I have no need for restrictions.

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When all the scenes flow together…

Today my parents and I went to the production of War Horse at the Schuster Performing Arts Center in Dayton. It was a phenomenal performance! Unlike most plays that pause in between different sections for changes in scenes or the props, everything today flowed in motion just like turning pages in a book. Speaking of the book, I have not read it (War Horse by Michael M0rpurgo)–nor have I seen the movie that DreamWorks produced in 2011; so I was a little confused in the second half but am very thankful for the change in seating arrangements they offered when we first arrived, so I could be close to the interpreters. It was a sad, but loving story (always best when based off true events). I can now put the book on my “to read” list, but seeing the play was amazing.

This week, all the “scenes” of the days seemed to flow together. Not a bad thing, just got a tiny overwhelming when you add the normal daily life events to tumbling health factors. The week started pretty typical: who doesn’t have insane schedules these days? I had a few important things this week: my driving test was the first. The PT gave me her clearance but wishes to see me again in six months. It was not until Thursday that I got clearance from my rehabilitation doctor at Children’s. I celebrated by going to Beans-n-Cream for a chai and some reading. I felt a bit social awkward, being out by myself for the first time and having to use my cane for balance, but I still enjoyed being out and back in my favorite coffee-house!

The most important thing was my doctor’s appointment on Tuesday. It was the end of month four of Sirolimus chemo treatments; the start of month five. Although there are no changes for right now as far as what I have been doing in treatments, I still discussed the physical changes that happened in my body over the WI weekend with my doctor.

On the way to WI, something in my body snapped and I got intense pressure (even more so) on my spine, which causes a list of new areas affected or the areas, such as my feet, to worsen. Simultaneously, I have had an increase of stiffness and numbness in my right arm. Over the weekend, I was hoping it was temporary…also because I was chilled all weekend, I thought maybe being back home in warmer air (which never happened, as this week our weather chilled to “winter weather”) and my own bed might release some of this new symptom. I am getting to a point where I need to stop going to bed hoping that tomorrow will bring a ray of release from it all, because it doesn’t happen that way (the way I want)–I only see it to be getting more unstable and on the downward slope.

I really was doing pretty well for the most part this week; I was not until Thursday evening that the pressure in my lower spine increased more…occasionally hitting the tailbone; Best way I can describe the feeling is like coming down on your tailbone while snowboarding. Yesterday was when it started to be obvious that it was affecting my balance more in the evening as I was taking smaller steps in precaution. I don’t want to fall. This morning, I just went ahead and used my cane; and now the walker.

To be honest, I didn’t write this post the past few days because I haven’t even had a chance to grasp it all; I can’t write on this blog (though I try my hardest) about all this in a way for you to understand. I don’t even understand, nor my parents or family that sees it direct and experiences the changes with me–just not physically. These past few days I really have just been a wreck–at least emotionally. And yet I don’t even know what emotions I am really having, because it resembles the production we saw today–all flowing together. And so right now, I am struggling. And that is about as honest as I can be…

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Living in a Fast Paced World

At Tuesday’s doctor appointments, we discussed transferring me to a neuro rehab clinic for my Physical Therapy and Occupational Therapy. This is still in the future plans, but because I currently have a driving restriction until I take a driver’s mobility test (based off the way I am currently walking, just to ensure safety on my reaction times)–it could be up to three weeks until I get the test completed even though I am on the current waiting list. Because of this, I am not able to get myself over to the rehab facilities and since I have already started with Home Health, the plan for now is to let them finish their sessions and then I go on from that point. I have been pleased with my PT sessions so far.

My first session of PT was last week and I start OT next week, which I am anticipating, because today in getting ready my hands lost grip of my makeup bag–momentary sadness to shatter a perfectly good bronzer. Anyway, while last week’s PT session was mostly talk and the “see where you’re at” balance, strength and mobility tests, this week was a full 45 minute workout. I have had PT twice already: one after my first blood clot to strengthen my left leg and the second session this past Spring to strengthen my neck and upper back muscles.

I have never experienced a singe PT session that would literally leave me so exhausted that I had to take a nap in the afternoon. To demonstrate how weak my muscles are–picture me on my knees, lifting the exercise ball over my head (repeat 4 times). By the last, my arms were beat. We also did a lot of balance exercises where I lift one knee while on the other and then rolling the exercise ball back and forth while maintaining balance. To the average person, these may seem so easy, but to a person such as myself, it was difficult. To be honest, today I felt like a toddler…learning to balance and lift things, freely falling over and struggling to get up. But the strength and retraining my mind to use the muscles does not happen over night..it is baby steps. 🙂

Of course, I overdid myself this morning after my session. I went downstairs and painted a canvas that will be on display next week at a pizza parlor in Yellow Springs. (more to come on that!) I finished but had some extra paint and don’t like to waste it, so I set out to finish a small abstract one as well. No joke, the last few seconds of “finishing touches” on the painting and the table topples over!! Thankfully, the painting was not ruined, but for the cleanup process, I was back on my knees like my PT session and struggling to get everything picked up without making a bigger mess. By the end of my painting session, I looked like a painting. 😉

I had been to Michaels a few weeks ago to pick up paints and a pack of 8×10 canvases. At the check out isle there were some extra-large reusable bags and on an impulse decision, I bought one in order to carry my paintings around when they go on display in Beans-n-Cream or anywhere else. Artistically decorated, the front says the classic line, “Stop and smell the roses.” I thought of The Story of Ferdinand by Munro Leaf. Growing up, Ferdinand was different. While his peers were shaping up to be the best for bull fighting, Ferdinand just wants to smell flowers. Only when he sits on a bee does anyone take notice of him. At the bull arena, he is adorned with roses…everyone expects him to put in a good show, and he just wants to smell the flowers. 🙂

Too often I try to rush forward in my physical body, even though it is no longer capable of the word “hurry.” I forget to stop, breath in, smell the roses (sweetness of God’s mercy and grace) and realize that I don’t have to feel pressure to keep up with the fast paced world. God can use me just as I am…like a child.

They say that I can move the mountains
And send them crashing into the sea
They say that I can walk on water
If I would follow and believe
with faith like a child

Jars of Clay. “Like a Child.” Self-titled debut album. 1995.

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Looking Upward

Over the weekend, I finally accomplished putting into chronological order and placing my college to present pictures in photo albums. It brought back many great memories. As I sorted, I found these pictures that made me laugh at the memory of the evening:

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During my years living in the Denver area, I lived in a neighborhood called Bel Mar. On the corner of Wadsworth and Alameda, this was the rising place for living and shopping. The Target I was employed at was about fifteen minutes from Bel Mar…connected to a flat mall that had an indoor mile track that ran its course around the stores. I enjoyed a mile walk on my lunch breaks. I think every mall should be modeled after that one.

Even though there were a few Target stores in the area, Bel Mar also built one a few months before I moved. It was one of the “new city” model styles where the parking garage was underneath on the “first floor,” making the actual retail store on the second floor, all of course equipped with escalators, a stairway, and an elevator. I opted for the escalators.

Mom came to Denver every other week to help me on my chemo weekends. After the grand opening of Target (we had watched it being built over time), I wanted to show her the inside of the new Target. Up until this point, I had only been in a few times, because it was more convenient for me just to get my needs and groceries from my Super Target rather than stop at another one on the way home. But with Mom, we had grabbed a few groceries and as we left, I made a discovery: they even had an escalator for your carts!!! I was laughing so hard, Mom was afraid I would fall down our own escalator. 🙂

Currently, I have recently developed a phobia of walking down the stairs. Going up the stairs is not a problem; just coming down. Too many falls in the past few months has triggered this phobia, but I can’t say that I had really classified it as a fear up until a few weeks ago when I mentioned it to a friend. Now I am not even sure if it is just the stairs I fear falling–I think it is falling in general.

With my balance continuing to worsen, I have now restarted Physical Therapy, but it takes place here at my house. Due to the decline of function in my hands (especially the right hand), I will also be starting soon some sessions of Occupational Therapy. The reason for having the sessions here at home is to help me with my everyday living. For example, because I started my first PT session last week, we did a huge overview of my current conditions and discussed the areas in which I need assistance. Most of my current frustrations deal in the realm of OT, but balance was a major issue for me in PT. She gave me a suggestion for going down the stairs sideways, but to be honest, it doesn’t make me feel any better about the decline. As for right now we are mainly focusing on extra balancing exercises to accompany the PT strengthening exercises I have been doing already.

To access my current conditions, my therapist had me perform some “strength and mobility” tests. I can only stand on one foot for a mere one or two seconds…and standing with one foot in front of the other depends on which foot is placed first. Considering I have had two blood clots in my left leg, don’t be surprised to hear that it is my stronger leg. I think it always has been to be honest. When we lived in Colorado, I did get the chance to learn how to snowboard before my balance would no longer permit the activity. My Dad insisted that my sister and I take a half day of lessons before we just went out on our own. At the rental shop, when deciphering which foot you will put forward on the board, the rental personal did a little test. He had me turn around and gave me a slight nudge. I put my left foot forward first. He said, “You’re a regular foot.” (A right foot is called a goofy foot.) I think if anyone gave me a little nudge today, I would just fall over.

I am seeing the reality that my balance and falling will worsen. I have no control over it. There are days when I am to the point of tears at my balance. Other days, I find humor in it. I think it parallels the balance of life: days when strength is strong and days when strength is weak…in both I need to keep looking upwards, knowing when I fall, He still stands.

I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.

Psalm 121: 1-2 ESV

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Unshakable

The other night at dinner, we were discussing old movies. Old–as in black and white…as in Charlie Chaplin, Laurel and Hardy and the like. We grew up watching many of these kind…either that or classic reruns of black and white television shows, such as The Lone Ranger, Petticoat Junction, The Dick van Dyke Show, I Love Lucy, The Beverly Hillbillies or The Andy Griffith Show. If I ever need a hearty laugh, these are bound for success!

Don Knotts, who plays Barney Fife on The Andy Griffith Show, also starred in many funny movies: The Ghost and Mr. Chicken, The Reluctant Astronaut and The Shakiest Gun in the West are personal favorites. In the 1968 film, The Shakiest Gun in the West, we find Jesse W. Haywood (Knotts) fresh out of a dentist school in Philadelphia and now pursuing the West to open an office and provide his services there. One hilarious event after another, Haywood’s vulnerability places him right in the middle of a secret government case in which he has been lured into by the stagecoach robber, Penelope “Bad Penny” Cushing, who has been offered a pardon if she helps solve the case.

Haywood at the beginning of the movie is not what you would label a western man. Everything changes for him when the other wagon men see–what they perceive–as Haywood fighting off a group of Native Americans. Suddenly he is a hero. From that point on, his pride is fueled, enough even to accept a challenge from the famous and feared Arnold the Kid. It is only after this that he discovers the truth about his fighting abilities–it is not him, but has been Penny the entire time. Crushed, he returns to the plain old Jesse W. Haywood…a nobody in his eyes. I don’t want to spoil anymore of the movie, but I will say that in the end, we see that Haywood learns confidence. He has experienced the West and longed to be something big–but in the end, it is not his pride or fighting skills that earn him his recognition but simply by being himself and what he does best: being a dentist.

When my sister was here in July, we watched this movie. 🙂 I have thought of it a few times lately more because it gives me a few good laughs when I get frustrated with my hands. As you may recall, my hands are weakening–curled fingers due to muscle loss in the left hand and extreme numbness in the right hand which results in lack of grip and sensation. It is not entirely noticeable but my hands also shake. Not violently but just a steady jitter.

When it first started, I did not think much of it, figuring it was just a phase or I was tired that day or anything else excuse-wise that came to mind. When changes happen in my body, I allow myself a certain period of time to test and take note if it is indeed a change or just a spontaneous reaction of tumors with the nerves. Sometimes things happen only once, never occurring again. Unless it is crucial–like my notice of hearing loss–I don’t mention anything to my parents or doctors until it becomes a relevant occurrence.

One night, my sister came home and as we were talking she just broke in midsentence and asked, “Are you feeling ok? Your hands are really shaky.” I had not mentioned it to anyone yet…guess it was time to say something. That was early summer. As the summer months progressed, so did the shake. Sometimes my left thumb will spasm. It does not hurt; I just have no control over its movement.

I really don’t notice the shakiness until it is obvious: when I eat, when I write or as I observed last night..when I paint in detail. I was finishing my last two paintings for Saturday’s festival (exciting 🙂 ), but on the one I was elaborating with flowers and side margin décor. My shakiness started to frustrate me as my marginal fancywork continued to expand farther and wider than what I wanted, topping it of with my right hand smearing the metallic red paint amidst the baby blue background.

– – –

This past weekend, there had been (and will be) a lot of conversation about the days ahead and my health. Since my body continues to change, we are moving forward to get the help and resources set up in advance so when life gets more shaky, we have some stability. It was a rough weekend emotionally. As if shaking in fear of losing “independence,” I was reminded that receiving this help will in return help me to continue to live as independently as possible. There are resources and services that we are not familiar with…this is a whole new chapter in life.

It doesn’t come naturally for me to admit that I need the help, but it is then that I am graciously humbled. I had to set aside my pride to see the goodness in this situation. I see a parallelism to my prayers as well. I have been contemplating what it means to “ask, seek, knock” (Matthew 7:7). Three action verbs…why are they so difficult to act upon? And yet I can come before God at any time, not with shaking or trembling, but with confidence.

Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need…[and] let us be grateful for receiving a kingdom that cannot be shaken.

Hebrews 4:16, 12:28a

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One month…

Yesterday marked one month of taking the chemo treatment, Sirolimus. Because it was the end of my first 28 day cycle of the drug, Mom and I headed down to Children’s for a doctor’s appointment. It ended up taking all afternoon.

It is strange. This time around it is as if I am indifferent as to what comes next. In discussing the issues at hand, I made my point clear about what direction I wanted to take in terms of treatment time without much else running through my mind. My doctor asked me if I wanted to continue. I simply said that I would for one more month until the MRI. If I stop now then how will I know if the treatments have been given a chance to maybe show something positive on the next MRI? He agreed that one month more is a good decision.

My indifference comes in part, however, because I also mentioned that I would not be surprised if the scans reflected negatively–based on the amount of physical changes I have had over even just this past month. More wobbly balance, weaker right ankle, extreme numbness in right hand, and hearing loss in the right ear. From the time I bought the Phonak Cros to the time it arrived, I had lost hearing in the right ear and I believe I still am. I returned the Cros last week, but I am satisfied with my choice to do so and glad I at least gave the device a trial run.

It is hard to decipher what is causing what problems. Since I started the treatment, I have had more problems with my intestines…but it is hard to point a finger only at the Sirolimus when I have also had an increase of pressure from the tumors there at the lower spine. Every physical problem seems to get tangled around an “unknown source” linked to the problem. Of course we all know that the “unknown source” is a tumor, but which one? That is the question. And I think that is why I just left all emotions yesterday. I have no control over what happens over the next month. Tumors may or may not be growing; even if they do not show change in size, they can change in density and still cause side effects. So I just let myself become void of it all.

I was quiet on the way home. I was not even thinking much about the appointment. I was thinking more about the conversation my dad and I had a few nights prior. We were discussing my walking, weak ankles, my muscles and bones, and my shoes. If you don’t remember, I have a knack for cute shoes. To me, they complete the outfit. As Dad and I were talking, what he was saying made sense: I do need sturdy shoes as now my bones are thinning and weakening and my balance is only so-so. I wear good shoes for a majority of the time, but I like to wear a cute pair of slip on shoes if I am going out to church or to a coffee shop and I like to go barefoot when I can at home. It might be time to rethink that latter part–is what Dad and I discussed.

In my distress of our shoe conversation (serious…giving up my shoes!?!), Dad told me that I should not worry about my shoes, because I am fashionable with my accessories, like scarves and bracelets. I thought that was a nice complement. I talked with my doctor about the shoes and what Dad said when we were discussing my feet. “I agree with him 100%,” (referring to the sturdy shoe notion.) So on the way home, half lamenting and half planning what to do with my shoes, I just let my mind wander. All over shoes.

We get home and Dad asks how the appointment went. “It was long.” That is all I said. Then I made tea. I finally started talking about the appointment (even though my mind was still on my shoes) and just gave a two sentence overview of the plan–get my intestines feeling better and go one more month to the MRI. Everything past that is dependent on the results. I think I was still indifferent to it all. Being an emotional person, to not feel emotion is weird. Maybe indifference is a slight emotion…or at least triggers one of self-pity. Whatever the case, I had it last night. I could tell: I ate a huge chunk of fudge and watched a movie. Then I just went to bed.

As I was turning off my light, I flipped through some flashcards of verses that my mom made me while in college. One read, “But He knows the way I take; When He has tried me, I shall come forth as gold,” Job 23:10. In one day, Job lost everything: his children, livestock, servants, property, wealth…and yet he still chose to say, “The Lord gave, and the Lord has taken away; blessed be the name of the Lord,” Job 1:21b.

I admit, there are times when it is not easy to say, “Blessed be the name of the Lord,” especially when I feel that things are being taken from me–whether they pertain to my physical body or to my possessions. But remaining indifferent to the road ahead will only make the journey more tiring. Choosing a life of praise is a better path to travel.

“If God sends us on strong paths, we are provided strong shoes.”

Corrie ten Boom

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