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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3 Comments

Filed under Adjusting to NF2, Family Times, Hospital Trips

3 responses to “It’s like lab work…Part II

  1. Tanis Huebner

    Have a nice lunch at Chic Fil A! Many details you have carefully shared…many opportunities to pray for you and your family!

  2. Megan

    Hey there sis!! Want to echo what Aunt Tanis said about having many details carefully shared… thanks for taking time to write all this out. I wanted to share with you two websites that are recommended by our clinic to patients who may have living-at-home-issues or allergies-to-medications.

    OneCallAlert.com can be used for 24/7 medical alert monitoring which would help you if ever you fell down while home alone….you have the option to wear a necklace or wristband with a button on it that you can press and speak with an emergency operator in your area, then from there an emergency response team will come to help you at the house.

    IdentifyYourself.com can be used to ‘save your life’….you can pick your choice of wearing a bracelet, necklace, dog tag, or silicone band and it will have all the medicines that you’re allergic to listed on them so that any medical person will not give you a dosage of it, if ever you’re unresponsive.

    Just wanted to share these with you and perhaps you can mention it to your Children’s Hospital Team to see what they think. Or you may not need to go through them at all and can check them out yourself. Either way, perhaps these will come in handy at some point if need be. XOXO, Megs

    • mel

      Thanks for the websites. We had talked about this before when I was still hoping to get a place of my own last Fall, but that obviously never worked out. 😉

      But this is actually a top priority right now on my list of needs to keep me safe and living independent, because I have been falling so often. I will be getting bracelet as I chose that over a necklace. I am not sure when, but soon. 🙂

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