Tag Archives: good news

Two months ago…

Yesterday marked two months of taking the chemo therapy, Sirolimus. Seeming like we had just made the trip to Children’s Hospital in Cincinnati, Mom and I embarked on yet another early morning drive. (And that was sarcasm…we literally had done the same routine on Friday morning for my MRI.) The only differences were (1) traffic–yesterday reminded me of why I don’t miss city driving; and (2) Friday I could drink coffee on the drive down–I could yesterday but not until after my lab work was drawn. I am very thankful for my Mom’s driving as I would have never made it on my own yesterday morning.

Yesterday’s appointment covered a LOT of things. We discussed my walking and balance, PT and OT therapy, the need for ankle braces, driving and safety, better communication methods for me between the team of doctors, and a few fun things like my paintings. 🙂 My initial intent was, as always, to blog the details and keep you informed on the latest like a news anchor, but I don’t think that it is best to do that this time. Everything is changing and more appointments are appearing; I will just blog as it comes.

Tonight I begin with my MRI results: I went to the appointment with a neutral emotion. A few weeks ago, under frustration, my thoughts were that if the tumors had grown more in the brain, then I would just want to stop the chemo. I don’t know where the attitude changed, but I realized last week that I found myself thinking differently. I reasoned that maybe two months was not long enough time for the medicine to have a chance, so regardless of the MRI results, I was fine with continuing the treatments. However, I didn’t want to be a pessimist, but because I have experienced continuing downside side effects, especially in my right hand, balance and right ear, I assumed the scans would show growth.

I assumed wrong. The MRI showed stable in the brain. 🙂 I still could be experiencing hearing loss and physical side effects from the tumors but that is where it gets tricky, because MRI scans only show growth, not density (if the tumors harden they squeeze more on the nerve)…but since there is no way to calculate this, I will just take the good news: there was no change. What a praise and answer to prayer! Two months ago I saw nothing but growth.

Overall, the MRI of the spine looked stable too. I learned something though; instances such as this amaze me at how much I seem to miss…then when I learn about it, my curiosity comes out as a weird question, “I have that??” It seems to happen more often than not…I seriously should do more study on my disease. Anyway, what I learned yesterday is that the tumor that grows in the spinal cord from C-4 to C-7 area has cysts resting on top and on bottom of the tumor. I never knew this. While the tumor has not grown any nor the bottom cyst, there was more fluid in the cyst on top of the tumor. They don’t know where the extra fluid comes from, but the cyst now rests in the brainstem.

They showed me the scan and the top cyst appears to be “ballooning” from the extra fluid (it literally looks like one too). It took me time to understand this effect of the cysts being like balloons, but basically it is like holding a water balloon and squeezing one end so that the other gets bigger. I asked if the extra fluid could be from the tumors in the brain that were growing…just maybe added pressure, but doctors were not sure.

Besides the physical challenges I typically blog about, the thought occurred to me that because this cyst is now in my brainstem, I should probably have more headaches (but I don’t have any) and more neck pain but that is minimal too. I could have a big list of side effects from the chemo, but so far I have only experienced a minimal few. I will remain on the chemo for another two months, then another MRI. Then go from there.

As my parents helped me today with the phone calls for the next step appointments, I thought of how I am surrounded: I have a circle of doctors who want the best for me, a family that sacrifices their agendas for me, friends who encourage me, prayer warriors who faithfully pray for me, and a mighty God who holds me in His hands. Changes are going to come and I am not the best at shifting gears…but as my Mom told me tonight, “You have to be flexible with this.” So as the calendar starts to overflow with different appointments over the next few weeks, I think I should just drop my expectations of how and when things should be done and just let God write in the details. It will make this complicated chaos more livable.

May all your expectations be frustrated.

May all your plans be thwarted.

May all of your desires be withered into nothingness,

that you may experience the powerlessness and poverty of a child

and sing and dance

in the Love of God the Father, the Son and the Spirit.

~Blessing given to Henri Nouwen by his spiritual mentor


Filed under Adjusting to NF2, Family Times, Hospital Trips

Surgery results.

I feel like lately a lot of my titles have been, “I’m Home!!!” Just to say it once more as an unofficial title, I am home!!! 😀 Actually, I have been home since last night. I got discharged around 3pm, and we got home around 5pm-ish. I am so thankful for that! I took a nap in the car and when we got home. I was to lay flat for the rest of the evening, so I ate a soup supper in bed and then ventured out to the couch to read for a bit before heading back to bed. Lots of sleeping. 😀 I feel much better today. They wanted me to get around normally doing things but still take it easy. I just have done things today like getting dressed, got myself breakfast/lunch, walked around from the kitchen to my room…and I also took another nap this afternoon. A pleasant day of recovery.

But now you are probably wondering how the surgery went. First, thanks for praying for peace about being put to sleep. Because I have a medi-port and told them again about being nervous/last experience, they decided that accessing my port and putting the anesthesia in my port would be faster in putting me to sleep. They were right! My parents came back with me to the hallway right where the surgery room is and they were there as they put in the anesthesia…and then I was just out. No going into the room, putting on the mask…nothing. I just went right to sleep right there in the hallway even before they pushed me into the room! A much better experience this time! I am thankful for that option and would choose it again if I ever had another surgery. They did have two other IV’s in my right arm, but they did not bug me and were taken out shortly after I woke up in the recovery section.

When I woke up, I was so confused…just typical after surgery groggy-ness. My parents came back and I asked, “I am done?” LOL. I was not in the recovery area for very long, and then headed home. Dad drew me a chart to explain things so I could understand…so I hope I can explain it to you so you can understand as well. The surgery went very well and it was still a good thing to have it done so we now understand what is going on. The most important things to know:

First, the Lovenox had already dissolved the new clot, so there was none to be taken out (which was a good thing). I will remain on the Lovenox until next week when I have my final whole day of seeing doctors (Jan 31st…my three-month check up with a round of different doctors). I also see the main doctor for the blood clot that day as well. Depending on what the doctor says, I may continue the shots for a while, but will most likely wean off the shots and take the Warfarin pill…for the rest of my life.

And second, they found that the clot from last year still had a large amount of the clot left. It is so hard and stuck in the vein, that the vein no longer is used. The artery was not the problem and since the vein is no longer being used, they did not put in a stent either. What they found was that my body had made new veins that branch from the left to the right across my back and that takes the blood around to the heart that way. They were happy to see that my body had already done this on its own. To be honest, I had NO idea that your body can make new veins! The more I learn about my body and what is happening on the inside, the more I am amazed at how God created our bodies in such detail!

There is always the risk that I can get another clot. Only God knows that and only He knows why I have had this clot…or even the last one. Doctors cannot pinpoint any answers and I don’t think we will ever know, but I am at peace about that too. I will most likely wear a compression stocking for a long while and will remain on the blood thinners (possibly) for life. It may help decrease that chance for another clot.

Right now, the back of my left leg is just a small wound. It is right behind my knee so bending it sometimes pinches, but I am walking more normal and put up my feet when I sit. I am not allowed to drive until Friday, but I get to shower tomorrow (glorious!). I feel getting back to normal routines will come quickly, but still going to take time to rest up and nap this week…as that is important too! It is snowy and cold outside, so it sort of gives me a good excuse to sit with a cup of tea and do some reading/rest anyway.

Thanks for all your prayers, emails, and texts! I am so overwhelmed at how our family has been wrapped around with love and support and prayers. 🙂


PS. I have been singing this song today:
“How Can I Keep from Singing” by Chris Tomlin


Filed under Adjusting to NF2, Family Times, Hospital Trips