Tag Archives: trusting in the Lord

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


Filed under Adjusting to NF2, Hospital Trips

Sweet Aroma.

If you happen to see me as of late, you might often times catch me with my nose in the air. Don’t think much of it…I am just trying to smell the air, because it carries a sweet aroma. Actually, I don’t even think it is the air. I think it is just my nose or senses. No one else can smell it. I can’t even tell you where it came from. If you are thinking this is insane–it probably is. Even my doctor had never heard of anything like this before. I am thinking it is from one of my medicines. I would have guessed Lovenox, because the scent started decreasing last week once I stopped the blood thinner shots. I was a bit sad, and aghast when I actually smelled something quite unpleasant. I am just one of those rare few that get side effects concerning the sense of smell. It certainly is not the first time that it has happened when taking treatments.

Like I said, I can’t remember smelling the aroma before the blood clot…but I sometimes wonder if I did but did not recognize it. I am a bit slow to piecing these things together. Right before my last doctors appointment, I finally came to my senses [LOL, classic Mel punch line right there–get it??] and realized that I am smelling this sweet aroma everywhere I go. I really can’t describe the smell. It is not vanilla per say, but almost like a fresh rose smell. I have no sense of smell. Literally, so I can’t even remember the last time I smelled a rose…so I am just thinking in my mind that the smell of a rose is the best possible answer. 🙂 I know it is not lavender! Maybe that is because I have never liked the smell–in essence, maybe I am making my smell based off personal bias of favorite flower smells. Isn’t this great? It is like a psychology class. 🙂 Regardless, my sweet aroma is like having a Glad plug-in affixed to my nostrils at all times. 😀 Coming from two and a half years of not smelling to having this aroma in my nose has been quite pleasant!

Last week, I did notice the aroma fade. I thought it ended. I would get wisps of it here and there…that is when I would stick my nose in the air and just smell–grasping as much of it as I could get before it was gone. Mom caught me in the kitchen; it happened at a red light coming home from errands (I am sure it looked most ridiculous…oh well); and it happened Saturday night after my sister and I finished a movie in the basement. Now that it has returned I don’t have to smell the air as often…because I smell it when I breathe. It is almost as if it is inside me.

The sweet aroma was not the only thing to fade last week: my left hearing aid is currently not working, thus, my hearing seemed to “fade” as I depended (or depend) on lip-reading and my right hearing aid only until Thursday’s appointment. My bruises are fading–my stomach is almost back to its normal color in most areas; and as I decreased my dose of steroids, what I got in return was a reverse of side effects of swelling, numbness, and extreme pain in the neck and upper back. As the medicines faded–the side effects worsened so bad that on several times I could not even lift my head. I was a hunchback. Not even my pain medicine helped very much on Saturday afternoon; so I warmed my rice pack, placed it on my neck and crawled into bed for a nap. That seemed to help!

I am now on the plan of getting back on the steroid pills at the moment. It will take time to get to where I was before, but regaining stability to where I can function is the key. It is the thesis of my doctor appointments on Thursday–to formulate a plan: keeping me functioning and independent as long as possible while decreasing the pain without using a lot of heavy pain medicines. Talking with my parents last night made me realize how much I don’t know. I have questions that seem to have no answer.

I also realized last night that I have been having inner denial. I know my body is slowing down, changing, fading…but I just chose the road to dismiss it. Doctor appointments seem like a blur of massive information; I usually get home and totally dismiss everything. I let myself try to forget that I have struggles, pain. I ignore it by pushing myself harder against it. My own act of inner denial of thinking, “I won’t get to that point of extremity health problems.” Sometimes I don’t think that is bad…it gives me the motivation to carry on and conquer. But I also can’t live a life ignoring it either. My dad reminded me last night that things will continue to change. I have so much pressure right now from tumors along the spine in and out that any slight change is going to effect my body.

There will be no timeline of events. No way to prepare or know when the next changes will be. The thing is–everything will fade in time.

For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known. (1 Corinthians 13:12)

– – –

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-18)

These promises will not fade over time. God holds my future. Amidst life’s pain and suffering, those words speak a sweet aroma to the soul:. “But thanks be to God, who in Christ always leads us in triumphal procession, and through us spreads the fragrance of the knowledge of him everywhere. For we are the aroma of Christ to God…” (2 Corinthians 2:14-15a).


*A song that has been on my mind since last week:

Shaun Groves. “After the Music Fades.” Invitation to Eavesdrop. Provident Records, 2004.



Filed under Adjusting to NF2, Random, Uncategorized