Tag Archives: Phonak

It’s like lab work…Part II

Yesterday morning, my mom, sister and I set out for Cincinnati. My first appointment at Children’s was at 10:30am, and although it turned out to be a very long appointment (which I am used to), it really helped in understanding more of the treatments and a few ” for future reference” ideas from my social worker in the case I start getting to a point where more help is needed in daily things.

Whereas last appointment I was emotionally calm, this time I seemed to be an emotional wreck. In discussing the chemo treatments and steroids with my doctor, I burst into tears as I tell him the thought of me not being able to be on steroids (which are moderately helping as much as they can with the pressure from the tumors) is just unthinkable for me. How will I function? Then I turn right around about an hour later and get upset when we start discussing the options for receiving help in the case I am no longer functional, such as areas like getting ready in the morning or in the event I need to stay home alone and need someone to be there just in case I need help. I blurted out defense, “I am fine on my own.” Yes, but for how long. I see now that these decisions also affect my family and although I rely on them and they will do anything to come to my aid…there may be a point in time when they just need to be family and I can get more professional assistance. And thinking that way bugs me. So I ignore that fact, when I may someday have to face it.

I felt yesterday was a more typical doctor appointment. It was like a teeter-totter. I had my concerns/fears on one end and I had my push to continue to try hard when things are slowing down on the other side. I don’t think there is a right and wrong to this equation…but I realized the continual need for keeping this in balance is important too and that balance comes best when I lay aside both my fears of the unknown and my defense wall and focus on what God sees. Some nights I get in bed and have relief when I say, “God is not finished yet…” and other nights I just get in bed and cry, telling him that I am not sure how this is going to work. I think I took both these emotions with me yesterday even though I am at a peace about starting the treatments. I think too that because my body has been changing, I have been fighting harder against it and putting a “state of emergency” on getting treatments started to see if they help. Again, I have no control of this, but getting that into my heart and mind is a difficult task. Something I am struggling with and have in the past.

In general, I can’t say that I can give you much details about the chemo, Sirolimus. To be honest, I think I found the statement, “Third time’s a charm,” to be false. This is the third time that I went over the chemo treatments and side effects with my doctor. It was a bit overwhelming. I understood everything but it is very detailed this time with specific instructions that I am nervous. My RN assured me in an email this morning that the process will make better sense once we get started. And it will not be like Avastin where I go and have one day treatments then recuperate for a few days, get back to normal living and then restart the process in two weeks. This chemo treatment will be taken at home (which I also learned that it is a solution, not a pill) and I will be taking it more frequent than once every two weeks (like Avastin).

As we discussed side effects again, my doctor made it very clear that very few have started the chemo while being on steroids treatment at the same time. However, because I don’t have an option to stop steroids at this point in time (I guess I do but highly unwise), the team of doctors are going to be monitoring my blood levels from labs and anything that I email of things noticed, because this chemo affects your immune system and they do not want me to get infections of any kind, especially in the lungs (could lead to pneumonia). Most of chemo will be regulated by labs and blood levels..it will be a slow process, but still the hopes I do well on it and possible halt of tumor growth.

A few of the other side effects I will be given more instructions on what to watch (such as sores in the mouth, fevers, headaches)…and I was given specific instructions that I was not allowed to drink grapefruit juice. Still not sure why, but it does not harm me any as I don’t like grapefruit. 🙂 The plan for now is to get labs done on Monday, and as long as everything with labs check for an ok to go/insurance for the medicine then I am set to start this Tuesday, July 2nd.

The second part of doctor appointments was getting my much-anticipated Phonak Cros! I was a little concerned about the (probable) loss of hearing that I don’t think I was as excited about it as I was a few weeks ago. I told my audiologist first thing about my hearing loss observation. We did a quick hearing test on the right side and it did show that I lost some frequency in the low tones. Surprising but then again not so much, because the tinnitus has changed from when I wrote about my mind feeling “unorchestrated” to now a lower consistent tone. I said, “It sounds like a man gargling.” Sometimes things are hard to explain, ;).

We adjusted my hearing aid on the right side to give me more volume. I decided to go ahead and give the Cros the full trial run (keeping it under warranty of 30 days). This means I have time to try it out in different settings and see if it helps. If I think it is not-or in the event I notice more hearing loss in the next few weeks-then I have the option to return it for full refund. I am really wanting this to work, but at the same time, the hearing loss is something I will never regain…so I feel I must be wise in the final decision and give this a good trial run.

It is a strange piece! It is very tiny and there is no ear mold…just this little 3-D triangle microphone that goes in the ear and this little plastic tube that is attached the actual body of the Cros that rests on my ear. I am so used to having ear molds that I panicked when Marcia asked how it was working. I was feeling inside my ear and since I felt no ear mold I thought I had lost it. It will take some getting used to–especially putting it in!!

I can’t honestly say that I think I notice it helping yet as it has only been one day. Last night I didn’t notice changes, but I do want to keep my thoughts open about it and not “assume” the worst that it won’t work. Tomorrow I have a lunch with a friend at Chic Fil A. No time like the present to test it.

And that is the current news…the end of my lab report. 🙂


Filed under Adjusting to NF2, Family Times, Hospital Trips

Hearing All into One Ear

You have most likely heard the expression, “In one ear, out the other.” It may not be official living proof, but soon I will get to say that literally speaking (not figurative)…with a more emphasis, “In one ear, transfer to another.” 🙂

Last Friday I went to get my right hearing aid adjusted. Because it is now my only ear I hear from, I needed a bit higher frequency for normal routine living. We did not go overboard on volume, but enough to where I hear voices better, including my own. The minute I started talking in a normal tone of voice was when we knew the volume was just right.

There was also exciting news! Instead of a cochlear implant on the left side, I am now anticipating the arrival of my new Phonak Cros. Phonak is the brand name of my hearing aids as well as other products such as the Cros. The Phonak Cros is a device that looks similar to a hearing aid, but smaller and has a completely different function. cros_bte_single


This is the Phonak Cros. However, I opted for a light mocha brown instead of blue. It is relatively smaller in size than my hearing aid. There won’t be any need for an ear mold as what you see here goes in my ear. How does it work? Well, since I have no hearing on the left side, I miss cues–mostly dealing with people talking or someone approaching me. The Cros has nothing in part on my left hearing. I will still hear nothing out of this ear even though I wear the device. What happens is that the microphone picks up on the sound (like someone saying “Hello”) and will transfer the noise to my right hearing aid.

If this does not make sense, just know that my right ear will have double time work! It will take time to get accustomed to the direction in which the sound comes; however, I am excited! I am excited to see how it works at the dinner table, in my shopping trips, listening to music in my car, Muffy meowing…it will be interesting!

When you depend on technology for physical needs, it can get frustrating. It is never a surprise to me anymore when in the middle of an important conversation, my hearing aid battery just dies leaving me to transition to full lip-reading. But for all the times of tears, hearing aid appointments, and cost of batteries (I might add), there are blessings. Not only will this new arrangement (in time) help me maintain a bit of social grace, but also the Cros will be linked to my right hearing aid, as was my left hearing aid before, so where I can switch the settings and volume with my left hand as it is my stronger hand.

God is my stronger hand. As I learn to depend on Him daily, I see there is still so much to learn. “Call to me and I will answer you, and will tell you great and hidden things that you have not known,” Jeremiah 33:3. Like the Phonak Cros, God links together the my disabilities with His abilities and carries them all in His hand. It does not stop my life from tears, doctor appointments, and the cost of following God into the unknown but when I do, there are blessings.

I am still learning this dependency–

…It’s amazing
How I forget
Can’t live my life
For lack of it
But the Light of day
I’ve always known
It’s in my heart
I’m not alone

Speak to me
Tell me all the things I need to know
I want to hear You now
Can You speak to me
I’ve opened up Your Word to free me
I want to hear You now

Make Your wisdom clear
The words I hold so dear
Bring the light into my dark
I hide them inside my heart…

*Audio Adrenaline. “Speak to Me.” Lift. 2001.


Filed under Adjusting to NF2, Muffy

My new droids.

Howdy. If you are eagerly awaiting the news of my hearing aids–this post is for you! The past few days have been interesting. I am in the process of retraining my brain to hear noise. Cool. And yet sometimes my first reaction is, “This is annoying!” Noise, noise, noise. I feel like the Grinch who hears the noise of Christmas below down in Whoville. 😉 There are exciting noises: I can hear myself breathe. I sound like Darth Vader. 😎 I can hear Muffy meow, purr and chew his food…which I thought was a frog at first. I hear better on the phone, but will still use Sprintcaptel. I have been trying to listen outside for birds, but I have not heard any yet. Communication is better, but that is part of the hardest retraining of the brain. My parents voices sound the same. I can hear the car engine tick…sort of annoying. I can also hear when the refrigerator comes on. When I text or type, I can hear the keys being pushed. And church echoed this morning, so I actually had to turn my hearing aids down. These are just a few things I have noticed. I was told that it will take 3-6 weeks to get used to these new hearing aids, and that it is easier for someone to adjust to new hearing aids if they have never had them before rather than if they switch hearing aids–(which I agree completely, based off experience!)

On my new hearing aids, I have all these settings and options to learn and understand; right now I feel a bit overwhelmed! The strangest habit for me to get used to is the method of how I turn the hearing aids on and off. These are my OLD hearing aids:

The number “4’s” are the volume control. It was always on number four unless there was times where the background noises were excessive. Then I would turn it down. Also, the switch at the bottom is how I turned it on. Imagine a good seven years of turning the switch off and on…now I have to pop the battery in and out. Old habits are hard to break.

Here are my new hearing aids:

This is only the right hearing aid. Both are this new “chestnut-brown” color and the same size. See how the battery is popped out? That means it is off. It might take another seven years to get used to that method. 🙂 These are like R2-D2! These little “droids” make beeping noises when it changes to a different setting and a little song when it turns on. They are also set so that my functions change automatically. For example, when I put the phone up to my ear…it automatically changes my hearing aid into the new setting. I do have the option to have manual settings. The only one I think that I will probably set for manual is the setting which minimizes background noises. I have plenty of time before my follow-up appointment to think about all the settings and my preferences.

Going to sign off for the evening. This past weekend was a big turn of events in many ways, which leaves me right now very exhausted! This morning I thought of Matthew 11:28-29,

Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls.”

 Off to make tea, then enjoy some quiet moments reading before I fall asleep. More to come…

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Filed under Adjusting to NF2, Muffy


If I had cable, I would only want it for two things: football and ABC’s The Middle. If you have not seen The Middle, I suggest you rent season 1 from Best Buy and start at the beginning. Season 1 is hilarious! The show is about an ordinary family in Indiana–hence “the middle of nowhere”. 😀 Mike and Frankie Heck have three kids: Axl, who would rather play sports than study; Sue, extremely optimistic and tries out for everything but never makes any teams due to some funny issue or lack of talent (until cross-country made the team a “no cut” team); and Brick, six-year-old bookworm with extreme knowledge who whispers to himself. Every episode presents the family in a real life situation…but ends as a family sticking together.

Some of the best quotes come from Sue. She is quite the character!

Sue sees a possibility in every situation. Most often–although her family tries to tell her simple truths she is missing–Sue’s naive and energetic personality does not get the message. For example: Leap Year. Sue’s birthday is on Leap Year and she is ABSOLUTELY CONVINCED that she is going to have a surprise birthday party, even though the family tells her that she is not. At one scene, Sue comes in the kitchen where Axl is eating a bowl of cereal. She starts asking Axl if he knows any details of the surprise party. Getting annoyed, Axl takes Sue by the arm and leads her to the basement, telling her to wait there and not to come out–Sue’s not understanding he is playing a big joke, thinks it is real. Axl leaves and there is no one in the house. All you see is an empty kitchen and then Sue says from the basement…”This is so exciting!!! 😀 HA! Best part–they DID forget her birthday and woke her up at 4am singing happy birthday. Thus, she was surprised and thought they were planning it that way the whole time. Her family let her assume so. 😀

I have a surprise for you..no joke! 😉 Tomorrow is a big day; a “THIS IS SO EXCITING!” sort of day!! 😀


The hearing aids I have now are 7 years and 3 months old and let me tell you–that is like dog years in comparison to human years…these things are OLD! Every new audiologist that I meet is shocked at the model of my hearing aids, let alone the fact that they work so well. My hearing aids have been maxed out (meaning the highest possible they can go) since spring of 2008 when my right ear collapsed at a chapel. Before that, we had discussed the possibility of getting new hearing aids, but we were not sure how long my hearing would remain after that incident. To be honest, I thought I would be completely Deaf by now. God had other plans as I still have a little hearing left.

Currently, my hearing loss in my left ear is considered severe to profound sensorineural hearing loss and my right ear is considered moderate to profound sensorineural hearing loss. American Speech-Language-Hearing Association defines sensorineural hearing loss:

Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear (cochlea), or to the nerve pathways from the inner ear to the brain. Most of the time, SNHL cannot be medically or surgically corrected. This is the most common type of permanent hearing loss.

(All Contents Copyright 1997-2011 American Speech-Language-Hearing Association (ASHA). All Rights Reserved. http://www.asha.org/public/hearing/sensorineural-hearing-loss/)

My hearing loss obviously comes from the tumors on the Auditory nerves. For the most part, the hearing loss has been gradual–except that spring of 2008. MRI results did not show any growth in the right tumor, so it was assumed that the tumor hardened on the inside. This is why doctor appointments can get frustrating, because I can have new physical symptoms but nothing shows on the scans. I have an MRI and hearing test every 3 months. I have been relatively stable since July 2010. A little prayer goes a long way. 🙂

The only time in these past ten years of NF2 that my hearing ever improved was when I was on the Tarceva chemotherapy pills. That was a happy hearing test!!! Ask my family, I am not a fan of hearing tests. I have to sit and punch the button when I hear the noise. I have such high pitch ringing in my ears that most often I just sit there knowing that I am supposed to be hearing things, but I have difficulty discerning the noises from the ever-present ringing. But most of all, I very much dislike the “word recognition” part of the test. I get asked often if I can hear. Yes, I can hear (with my hearing aids on); however, if I am not reading your lips then you sound Japanese. Words have no meaning if I cannot read your lips. Simple fact: I am fluent in English AND in lip-reading (also American Sign Language, but I lip read so well that I only use ASL and interpreters for church and doctor appointments..or if I chat with a Deaf individual that I meet at stores, etc.)

My current hearing aids have three different settings: Setting 1, I hear everything. Yes, everything. Maybe not quiet things, but there is a constant background murmur! I also hear everything in LOUD proportions. Setting 2 focuses on people who I am talking to and helps to minimize the background noise. Setting 3 is supposed to be for the phone, but when I do call people on http://www.sprintcaptel.com (like a free TTY service), I usually leave my right hearing aid on setting 2. I cannot hear well enough out of my left ear to carry a phone conversation.

If you are a hearing person, what things would you miss hearing the most if you had sudden hearing loss?? Just curious. I miss listening and following along with music; hearing frogs, crickets and birds–even Muffy’s meow!! There are other things: communication with little kids or just my family in general, especially in night car rides or star-gazing chats on the grass. Watching TV or movies with no captions; my grandparents calling me at 7am on Saturday mornings to chat about life and current events; listening to the radio (we grew up on Adventures in Odyssey!!) and hearing sirens, such as police cars, firefighters or smoke detectors. Thankfully, modern technology allows me to have an amazing alarm clock that uses a flashing light and vibrator to coordinate with fire alarms and door bells. I do not use the alarm sound anymore, but the vibrator and light work just fine for me! 😀 Here it is:

See the yellow button? There is a connection at the back for a lamp. So when you have the lamp plugged into the alarm, you turn the light on by pressing the yellow button. The volume and tune knobs are if you want the alarm sound adjusted. On the right side where there are words: the top is “outlets”, which allows you to choose your wake up preferences. I set the combo of vibrator and light. The bottom is for the vibrator. You can choose steady or pulse. My favorite is pulse, because otherwise it feels like a steady head massage. 😀

I will say one quick note on having hearing aides…whenever my ears get tired of hearing, I just take them out. Instant silence. I realize that I have come to a place in life where I actually enjoy a few hours of silence. In silence, I like observing; I like focusing without being distracted by other noises; I like singing songs in my head or have a conversation with God. Sometimes God seems silent. Like Elijah, I expect to see or hear God in big ways (Elijah looked for God in the wind, earthquake and fire); He came in “A still small voice” (I Kings 19:11-12.) God has done incredible things in my life right down to the little details. Even today, another specific prayer was answered. When I tune into God–not distracted by the noises of the world–even in my deafness, I can hear His still small voice–the voice of Truth–say, “This one’s mine.”



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