Tag Archives: hospital trips

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. 🙂

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Filed under Adjusting to NF2, Family Times, Hospital Trips

January MRI results.

Hi guys.

Just wanted to give you a heads up about my doctor appointments yesterday. It went well and best of all, I got to spend the day with my dad. 🙂 Ok, so not the greatest father/daughter date but the conversations were well worth the drive.

First, my MRI showed stable results. And while that is a praise, it is also a bit of frustration just because of the increasing side effects…mostly numbness/weakness/finger curling in hands, lack of bowel movement on its own and pressure in the neck. This means that the tumors are probably changing density or hardening–there is no way to ever know that but we just have to assume that something is still causing the pressure on the nerves even if they are “not growing.”

So, with my main doctor–we discussed all my questions and current observations about things I notice changing. We discussed again my two possible treatment options. I have a much to think and pray about in the next few weeks. I need to reread the papers my doctor gave me at the beginning of January and review the treatment side effects, talk with my parents and ask a few other questions to another doctor since I will now be on Warfarin blood thinner pills. Not saying that I will do treatments but not saying I am not either at this point. I just need time to really think and pray about things, as yesterday my mind was a bit overwhelmed. Sure, I got all my questions answered, but left with a full mind…because it is my choice; my doctor is not telling me what to do–so I want to be wise in the decision-making process.

As for everything else we discussed, here is a short synopsis:

I am on the last 2 weeks of the steroids. I started today as the first week where I decrease the amount taken everyday. The following week, I go every other day–then I am done and off the pills. One less pill to take in the morning: YAY 😀

Today, I started taking Warfarin (pills) with my Lovenox. I am officially starting the transition off the Lovenox shots! YAY. 😀

I saw the pain team again. Because I am on such a low dose of Lyrica, they added one more tablet a day to see if that helps with the tension and numbness I am having…especially the pain in the neck area. We also discussed different stretches for me to do to help loosen my shoulders. I also need to work on my posture and keep my chin in when sitting or standing as that is all related to the shoulders and posture. Time for me to get back into stretching exercises in the morning and also, I am going to restart on my own the physical therapy exercises I remember to help get my left leg muscles back to working.

A day like yesterday can be long, strenuous, and mass information–but I like my doctor team so much that it is like talking to friends. They let me ask my stupid questions, laugh with me as I share stories and offer encouragement when I am frustrated (or crying). I am so thankful for all of them.

And that ends my January chapter…one month of the new year down–11 more to go. 🙂 Thank you for all the support and prayers for me and my family…I am so thankful for you too.

More to come…

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Filed under Adjusting to NF2, Family Times, Hospital Trips

I have decided.

Hi everyone. Just wanted to give you a quick note this morning before I head out for the day. I have to go down to the Liberty Children’s campus (about an hour drive) to get some lab work done and then my MRI is at 4pm. So this will be another long day, but needs to be done. I actually fall soundly asleep during my MRI’s so I really can just look forward to a few hours nap. 🙂

I have made my decision about whether or not to have the surgery to remove the clot/see if a stent is needed. I really struggled with my decision. My darkest fear is being put to sleep…bad experience from the last surgery to place my medi-port in caused this. I talked with my family Saturday night and was really honest with them. I think too I was still not understanding how the anatomy and procedure works, so I got a more clear understanding on that as well. But I still had to decide.

As I got in bed, I made a list of pros and cons and did some thinking. In the morning while I was doing my devotions God kept bringing me back to Psalm 4:8, “In peace, I will both lie down and sleep; for you alone, O Lord, make me dwell in safety.” I looked at my list of pros and cons. If I truly did have more pros than cons, and if the fear was the only thing holding me back…I figured that was pretty lame. God gave me an overwhelming peace about my decision. Through the course of the day–discussing more things with my family…calling my sister and thinking of things ahead, I see now that this is a good thing. There are many positive aspects of doing the surgery and so being now at peace, I am ready.

I do not have a date yet, but it will most likely be at the end of this week. I will keep you all posted. Thank you for your prayers this weekend about my decision. Please continue to pray for my family as this is a lot for them too and quite frankly–we are exhausted.

May all your expectations be frustrated.
May all your plans be thwarted.
May all your desires be withered into nothingness.
That you may experience the powerlessness and the poverty of a child and sing and dance in the love of God the Father, the Son and the Spirit.

*Prayer over Henri Nouwen by mentor.

More to come…

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Filed under Adjusting to NF2, Family Times, Hospital Trips