Tag Archives: how tumors effect your body

To Feel Numbness

This past Mother’s Day, we decided to treat Mom with a picnic at the state park just down the road. It was such a lovely day! After the Frito taco style lunch, everyone played some outdoor games…I focused on Frisbee and amazed myself how good I could catch while sitting on my walker. Throwing it back to another person was a different a story. The day had me thinking of years past where we would take family picnics in the mountains. But instead of picnic birds and cute chipmunks joining the feast, we just had bugs. While Melissa’s pup, Basho, tried to eat a caterpillar, I was distracted with a few baby spiders crawling around at the end zone of our picnic table cover.

“They’re in nature and they’re so tiny,” I kept telling myself. Mom and Dad have done a pretty good job of keeping spiders out of view in the house–it has been a while since I have even seen one so close. I think the time helped calm my previous state of hyperventilating in arachnophobia; even watching The Hobbit: The Desolation of Smaug. was more tolerable (of course, Marcia and I were a little distracted too at that part, as we were attempting to get my caption specs to work properly!)

Anyway. back to Mother’s Day, the sun was shining and not yet having my sunglasses on, I was in squint mode trying to keep up with all the lip-reading conversations. Up until this point, lunch had peacefully survived without epidemics of girlish squeals of bugs–but I broke that trend when all of a sudden, I realize that this is no cataract fuzz in my right eye view. It was a spider! And it was no tiny baby one at that either! My first reaction–the glasses got thrust off with my left hand and shoved into Dad’s face (well, more like over his plate that was still full of Frito taco lunch.)

“There’s a spider on my glasses!!” Dad takes my glasses and flings the spider off into the grass. I continue, “Gross! I am infested with spiders!” Still disgusted, it occurs to me, “That could have been crawling on my face!” And Marcia confirms, “Well it was on your arm.” Yeah, thanks for the warning.

I am not certain as to why numbness is a side effect of the tumors. I understand muscle atrophy and weakness, but not the numbness or why/how it also affects the muscle weakness too. I can’t even tell you when the numbness first began…I don’t remember. All I remember is that it started in my left ring finger at the tip. Slowly over time, it progressed to other fingers in the left hand and my toes. A definite turn took place the summer of 2010 when the tumor on the 5th Nerve doubled in size, suddenly leaving me with intense jaw pain. I first thought it was TMJ, as others in my family have the condition, but as soon as I felt the first tingles of numbness I knew it was tumor related and it was confirmed by the MRI results.

Numbness in the face was strange at first–now, it covers everything: forehead, gums, cheeks and neck. As of this past week, I have confirmed numbness in ¬†the upper left lip. Mom says it is not noticeable, but if you studied my face closely, you can see the lip is a bit poofed and that makes the lip slide to the right (just a tad, but still, I see it.) It’snot just my face…my feet (can’t really wiggle my toes anymore), whole left leg and right arm and hands…areas on my shoulders and back too…numb.

It is hard to describe “numb.” One would assume when you’re numb that you don’t feel anything. Almost but not quite. I feel things, depending on what it is. Just examples: I feel the ground when I walk and I feel what I touch with my fingers (minus the right pinky and my grasps are very weak); I can’t feel temperatures in the hands or feet, so it is hard for me to tell if my feet are really cold or if the plate coming out of the microwave is hot. Numbness tingles like when you come indoors after being outside on an extremely cold day–the thawing effect. Numbness is heavy. Numbness is a pain (although too figurative, I am implying the literal definition.)

As I was thinking of numbness this week after confirming it in my upper lip, different situations came to mind. I found myself, in numbness, with a burden for those who hurt deeply (physically, mentally, emotionally, spiritually.) Whatever state, I realized that people in immense pain use “numbness” (or the forms of action in a way to numb the pain), to escape pain (or the hopes of escaping their current suffering.) But you never escape through numbness–because you feel numbness…it is heavy, it is a pain. Numbness (or the denial of the situations/conditions one is living) is not the answer.

“Held” by Natalie Grant

(*Second verse)–This hand is bitterness.
We want to taste it, let the hatred numb our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.

Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?

 

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Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

Seeing Ahead

Last week I saw the surgeon ophthalmologist for the cataracts in my eyes. After a whole day (literally) of sitting in the waiting area or the exam rooms, I left the hospital with extremely tired eyes. Cataracts plus dilated eye drops does not equal a good equation. ūüôā

I haven’t had an eye exam in close to two and a half years. When I see my regular ophthalmologist every four months, it is only a visual field test and a quick shining of bright lights in the eyes as he checks the optic nerves for signs of swelling. No dilating, no tests where they set lenses and click back and forth–in which you say whether “one” or “two” is the clearer option. Simple and fast.

That being said, this eye appointment was interesting. Not only were my eyes so dilated (you could hardly see the color of my eyes), but also the bright lights in the eyes were making lip-reading a colorful experience. Everywhere I looked seemed to be a mesh of sea-green and magenta. I also realized that taking the option “one” or “two” test, I needed assistance; if I was viewing the letters on the wall with Star Wars looking vision specs, how was I to know which number was with which lens? I solved the problem by explaining that Mom should stand next to me–when the nurse flipped the lens, she would say the number. Mom would then tap my hand either once or twice and I would say which option was best. It was like a signing interpretation in the dark!

When my optic nerves were swollen and I was seeing black spots in my vision, I started a medication to help keep the swelling stable. Even last spring when the MRI showed growth in 80% of the brain tumors, my vision was not affected and I am very thankful. Although, currently, I am not seeing black spots, seeing through a fogged lens is starting to annoy me. I am out of focus. A least at home I can squint; I was told not to squint when taking the “read the letters as far down as you can” test. Squint focusing was cheating. ūüôā

The past few days, has been difficult. It is testing my patience. I left the hospital with a surgery date: my left eye will be corrected July 1st. It seems so long…the thoughts, “Can’t it just be fixed right now?’ come to mind. Maybe more so, because of all my health problems, this is one that can be fixed…it’s temporary, anything else I experience is a permanent loss.

This morning, the story of Jesus healing a blind man came to mind (Mark 8:22-26.) When Jesus first laid his hands on the man’s eyes, the man could see–but it was not clear: “I see people, but they look like trees walking,” (24.) It was only after Jesus laid his hands on the man’s eyes for a second time that the man’s vision was fully healed. I wondered what the blind man may have been thinking after the first time Jesus laid his hands on his eyes, or even the disciples who were also present. It is not important, but the story does show a testing of faith.

The answers to our sufferings may not come rushing in all at once; in fact, it is rare if they do. What I see ahead may appear hazed and out of focus, but it is temporary–one day Faith will be Sight.

Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

I Corinthians 13:12, NLT

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Clumsy Me

Considering how clumsy my hands have been lately, yesterday morning I thought I was functioning pretty normal: no spilled coffee or dropped medicines, no broken dishes while unloading the dishwasher, efficient in time getting ready and typing (finger poke) a few quick emails. By noon, I was on my way down to the basement to start the top portion of a large painting.

I was having no problems getting my paint tubes from their assorted-by-color plastic containers on the floor and only had one jammed lid due to dry paint. The sole reason I forgo getting beauty nails at a salon is that I manage to paint my own nails (and hands for that matter) in a very festive way. I also chip my nails in a very festive way…and as such was my painting morning.

Somewhere along the way in the afternoon, the tides changed and my hands resumed their clumsy status. Of course the cold fingers could also be associated with part of the problem. I am very thankful that I have not done damage to assets like my laptop as I carry it from my room to the kitchen. I drop my cell phone repeatedly, but it has a protective cover–that is now cracked (time for a new one!)

Yesterday before dinner, I asked Mom to carry my laptop for me back to my room–a brilliant request as I was losing my grip on many other things during the evening…in particular, circular objects like my biscuit full of apricot jam and cylinder shaped objects like my Hazelnut creamer as I was pulling it from the refrigerator shelf. It fell to the floor, lid cracked, and about what I would blend in three cups of coffee spilled on the floor. It was the grand finale to my day.

I’ve written blog posts before about my hand history: how the muscle atrophy started, Occupational Therapy sessions, finger splints and other devices to help my function as my hands weaken, and my left ring finger resembling the appearance of a “Gonzo nose.”¬†And although my MRI results since November have reported back as a stable status, there is a continuing message coming from some tumor (unknown) to the brain that blocks the message to the muscles in my hands–specifically fingers and thumbs. Hence, since November, I have experienced a loss of hand function…which means more weakness, more numbness and 7 more fingers that now too are starting to resemble a “Gonzo nose.”

In moments of clumsyness (or flat-out frustration, embarrassment), I sometimes have a moment of humor–where I can smile contrast to grunts or tears. Enter: Yzma.

EP8aT0z http://i.imgur.com/EP8aT0z.png

In Disney’s¬†Emperor’s New Groove, Yzma goes from being Emperor Kuzco’s long-time guardian and advisor¬†to being fired after she plays “Empress” in his absence. In a fury, she devises a plan to rid the empire of Kuzco and reign in his place. All goes well and according to plan until her handyman, Kronk, burns his spinach puffs at a dinner they prepared for the Emperor. Kronk dashes to the kitchen leaving behind the freshly filled cups on the platter, in which one is intended for Emperor Kuzco with poison. Upon returning, Kronk realizes his mistake, takes the platter to the side, blends all the liquids together returning a portion into each cup, and then gestures to Yzma not to drink hers. She quickly throws hers in the plant beside her, turning it too into a llama (but looks more like a horse.)

At the end of the movie, Emperor Kuzco has had an adventure that leaves him with a changed heart and a new friend, Pacha. As these two enter Yzma’s secret lab to retrieve the bottle that would turn Kuzco back into human form, Yzma and Kronk are already there. As Pacha tries to quickly grab the potion, Yzma knocks the shelf so all the bottles land on the floor. “Oops! Clumsy me,” is what she says. ūüôā

My hands–as they continue in this weakening and clumsy state–are another part of my journey. I cannot lie that I have had many thoughts about what life will be like in the event I lose complete hand function. “What am I going to do when I can’t use these?” I cried a few months ago in the kitchen holding up my hands for Mom to see. Mom didn’t have any answers; I didn’t expect her to either. I know God holds the answers…to my prayers in all the uncertainties and fears, hopes and dreams. Unlike Yzma, I will never hear Him say, “Oops! Clumsy me.” Because He has promised me forever in the palms of His hands.

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Filed under Adjusting to NF2, Books and Movies, Paintings

These Hands

Today I thought of something funny: VeggieTales’ Larry Boy character has super-suction plunger ears! This thought enlightened my state of frustration¬†as I was¬†stalling¬†between the entrance and outdoors of Target’s entryway trying to grasp my small Starbucks cup and walk at the same time. When I finally made it to my car I decided that I should not get a coffee less I was pushing a cart. These hands no longer grip cups¬†the way the way they should…maybe I should look into gripping gloves.

My whole shopping list at Target consisted of two things: band aids and bathroom cups. The band aids are just for safe keeping as I seem to use them often, but the bathroom cups are a new idea I thought of the other night as I found myself rinsing my mouth after bushing but in the end biting my finger. My fingers no longer make a “cup-like” position as I found out.

My right hand is¬†now entering a¬†stage of numbness where my fingers are very heavy and¬†tingle while the¬†function is draining.¬†I can still use my hand (my left is weak but actually now the stronger of the two hands.) My hand is just slow. Simple things such as holding¬†a drinking cup (unless a mug), I¬†now hold¬†with both hands.¬†I hold my toothbrush and chapstick¬†a certain way between my index/middle finger as I drop them otherwise.¬†I cannot pick things up with just my thumb and index finger,¬†so when I drop anything on the floor, I have to use both hands in a scoop like fashion to try to recover it (while also¬†trying to keep my balance).¬†Zip lock bag days are nearing an end; and opening anything else in the kitchen can usually be done with these gripped circles my mom has or with a trusty pair of¬†scissors. ūüôā¬†I can’t¬†get¬†my hair ties in my hair and just an honest note, even sometimes certain things¬†in dressing¬†myself becomes difficult. And typing is finger poking.

These changes¬†in¬†my hand¬†have happened very quickly over the past two months–it is often¬†hard to see past the downslope¬†of health. Next week will be the end of two months on the Sirolimus¬†chemo treatment. My MRI is this Friday (the 23rd) and doctor check up on Tuesday (the 27th)–between¬†the results of those scans, my current¬†physical state and chemo–there is a¬†lot to think¬†and pray about.¬†Try as I can to remain¬†trusting¬†in the¬†Lord, my mind is often consumed¬†with the “what if” of the unknown¬†future that it¬†consumes me.¬†This happened¬†last week, but it was¬†also largely guilt I placed on myself for getting my chemo¬†doses¬†wrong with the new syringes.

In a conversation with my sister, she mentioned that because I have changed so much physically¬†over the past few months, the mental/emotional part of my body is trying to catch up to speed, resulting¬†in the way I have been over the past few weeks: emotional, distant and when not thinking of health, consuming¬†my thoughts with things like teas, books¬†or¬†movies. I am not content…I have¬†been in need. So when my sister mentioned this equation imbalance, I saw the truth¬†in it.¬†Up until this year, all the side effects in my physical body have been slow progressive. This enabled me to adjust to the changes at a steady pace…whereas these past few months it has seemed to be my whole body and I cannot keep the same pace.

I think often: “How¬†am I going to continue to live like this?” But then I remember that¬†I DO live…and God will be at my right hand until the end (Psalm 121:5).

Madam, when you¬†[come] to the other side of the water, and have set down your foot on the shore of glorious eternity, and look back again to the waters and to your wearisome journey, and shall see in that clear glass of endless glory nearer to the bottom of God’s wisdom, you shall then be forced to say, ‘If God had done otherwise with me than he hath done, I had¬†never come to enjoy of this crown of glory’. It is your part now to believe, and suffer, and hope, and wait on[.]

Samuel Rutherford*

*”4/to Marion M’Naught.” Letters of Samuel Rutherford: A Selection. Carlisle, PA: The Banner of Truth Trust, 2012. pg. 18.

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Thursday’s doctor visits.

And it happened. May is now officially over and June has just begun. Crazy to think!

So I thought I would just recap from where I left off…Wednesday evening:

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest of the year, but as I gather my list of inefficiencies, I remember that when I can’t…He can.

I wake Thursday morning around my typical time, 6:10 a.m. This typical morning time started about a month ago…steroids can cause change in sleeping patterns. Lucky me, I get¬†morning shifts where I see the sun come up and drink fresh cups of coffee at breakfast.

Thursday was no exception except our coffee was on the go, because we had to get down to Cincinnati for my doctor appointments. The day turned out to be relatively fast appointments and we even made it home before 4:30 p.m. which is a record breaker!

I came prepared with my list of questions and observations of things over the past three months. The doctors said I am doing well for the condition that my body is living. And considering the results of my MRI, that prior sentence is an answer to many prayers daily on my behalf.

The MRI of the spine showed stable, which is not what I was expecting, because it usually has more liquid in the tumor at the base of the neck growing in the spine. I asked if there was more fluid in this tumor, but the measurements did not show so.

The MRI of the brain is what surprised me. It showed tumor growth in the meninges areas, including the 5th nerve, etc. I asked out of curiosity if my doctor had a count of how many tumors were growing. He did not know, but estimated about 80% of the tumors in this meninges area were growing; a few as much as 3-5mm and that is the most growth I have had yet. The tumor on the left acoustic nerve has also grown. When I mentioned that I had more ringing and my hearing test results from last week, it made more sense of why my hearing has decreased in that ear rapidly over the past two months.
Because I have had a lot of new side effects, I asked if the tumors from the brain are the ones effecting the rest of my body. It seemed strange to me that this¬†could be probable. I¬†guess I don’t know enough about the brain.¬†Anyway, my doctor¬†said that between the tumors in the brain, the one in my neck and all the ones in the spine down lower at the abdomen–it is extremely difficult to decipher¬†which tumors¬†are causing the problems.
My initial¬†thought was¬†that they would increase my steroids, but because I have been experiencing certain¬†side effects, they are keeping¬†me on the¬†same dosage I had been taking already.¬†The steroids are just to help keep the pressure from the tumors down, but don’t have any¬†control on the tumors as I also have thought this whole time.
Right now, I do have a chemo treatment option. It is also the last option at the moment that I have as far as studied/approved treatments. It is an oral treatment, so I would take it by pill. We went over the possible side effects again. They seem tolerable if I would get any but most effects deal with the blood cell counts and high cholesterol. I could also get a rash, swelling in the face, sores in the mouth (things like this.)
Thursday morning, my reading in Oswald Chamber’s My Utmost for His Highest talked about complete trust in Jesus: “Jesus Christ demands that you risk everything you hold on to or believe through common sense, and leap by faith into what He says.” I didn’t make my decision on this chemo treatment on Thursday. In fact, I still have to¬†pray¬†more about¬†it and make sure that this is¬†what God wants me to do.¬†But one thing is for certain–I feel God¬†had prepared¬†me for¬†that day, the news, the treatment possibility.¬†I had a¬†peace that I¬†normally don’t feel at doctor appointments.
I can’t say that over the weekend the peace remained as strong as what I felt on Thursday. There were times of doubt, fear of the unknown, hard questions to ask myself.¬†But when the time comes for my decision, I want to know the fullness of His peace like I felt on Thursday. The¬†peace that passes all understanding¬†and¬†say, “Whatever my lot, thou hast taught me to¬†say, ‘It is well! It is well with my soul!'” (Horacio G. Spafford, It is Well with My Soul. 1873.)

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