Dr. Appointment Today..
ETA: Please pray for my friend, Kate Snodgrass as she meets with her doctors Thursday at 4pm after receiving news that Her MRS findings are consistent with a tumor and to discuss further surgery and chemo. You can follow her story here : A Brain Tumor Story.
I completely forgot to tell you guys that I had an Neuro-oncology appointment today! I didnt have a MRI, I will have one on th 19th of December.
Things we discussed:
We are planning a trip to Virginia for Christmas, so I had many questions about that. My main concern is that my platelets will be too low and I will feel lousy… Well my platelets today were higher than they have ever been since I started chemo (165) and I am two weeks out! This is normally when my labs bottom out and they haven’t this month.. So He said that I was clear to go to Virginia and that I shouldnt have any side effects if my counts do what they did this time. If you remember, they lowered my dose of Chemo because my platelets were 33 on October 15 so we think that this dose is a good dose for me right now. My mom was concerned that it was too low of a dose because I felt so great the first three days (days 4-7 I felt horrible but not as horrible as I did last time) and the answer was no because I was still having side effects so it is still doing its job..
Robin, (the oncology nurse) prescribed Amitiza for my constipation. I was concerned that the insert said that it was to treat “Idiopathic Constipation” which means that it is to treat constipation that is from an “unknown cause”. He said that it was fine because it didnt have any Central Nervous System involvement. So I will take it with my next chemo cycle, which is the 9th.
I asked him about not being able to sleep the last few days of my Chemo cycle and he asked if I had taken Tylenol PM or Benadryl.
Tylenol PM does not put me to sleep and leaves me really groggy, and the same goes for Benadryl. He said that he would rather not prescribe anything just yet and asked that I try to deal with it because sleeping pills effect the Central Nervous System (I am seeing a pattern with the Central Nervous System!) We agreed to table that discussion until after my next cycle. I am going to call Walgreen’s and see what other OCD’s they have for sleep.
I also talked about the right sided “heaviness” that I experience the last two days of my Chemo cycle and he said that it was evidence that Chemo was doing it’s job. He said that if it were “weakness” he would be concerned, but not to worry if my arm and leg feel “heavy”, especially if it only happens when I am on chemo and goes away as soon as I am off.
We discussed how loud everything is to me since my surgery and treatments. Robin said that it was normal, and will go away.. I was so very glad to hear that.
Speech. Where to begin. When I become frustrated, I can’t pull words from my head to my mouth. I stutter and search for the word verbally, but I can visually see it in my head. I asked if that was normal, and will it ever come back. Robin said that it was most likely the combination of Radiation and Chemotherapy (and surgery) and that it is a common problem that many patients complain about. The good news is that it is most likely not permanent. It usually goes away after two years of not being on chemo. I cant fathom being this way for the next 3 years, but I can handle it knowing that there is a large possibility that it will go away.
It was a great visit, but I am exhausted and just plain worn out! I hope that your Wednesday was wonderful and that you made many lasting memories today!
Hug a neck ;) ,
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Almost 8 Months….
It has been almost 8 months since I found out about my brain tumor (April) and almost 7 months since I found out I had cancer (May). I wish I could say that it has gotten easier knowing I have cancer, but honestly, it hasn’t… it has just become more normal, a new normal. 8 months ago my families world was turned upside down in a way that no ones should ever have to be, yet many peoples are. Cancer can leave devastating effects on not only your physical health, but your emotional health too. You feel invisible, yet like a bright exclamation point at the same time. You want to scream “I have cancer!” but you don’t want to draw any more attention to yourself than has already been drawn. You want your everyday boring life back, yet you know that it will never be that way again and there is nothing you can do about it. Once cancer has entered your life, it never leaves. Even if your body has no evidence of it, your mind still does.
So you try to protect it as much as possible, your heart too. But every once in awhile something creeps up and throws you down again, and you start the process all over again. Something reminds you of how bad this disease sucks and how insensitive it (and others) can be, and you hit rock bottom yet again. You watch television shows and inevitably every.single.one. has someone with cancer, or related to someone with cancer or friends with someone with cancer and it reminds you all over again that that someone is you.
You wonder if God sees you. If He hears you. If He cares. Deep down in your heart you know that He does, you know that this world is not your home, you know that this body is just a vessel, but it is still hard to trust that His way is perfect, even when you know that it is. You constantly remind yourself that He sees your every tear, yet you wonder how in the world can He hold them all because you have cried oh so much.
You try to be strong. You try to be a better person. You try…
But sometimes its okay not to be strong.
Its okay..
Jill Phillips-I am
Oh gently lay your head
Upon my chest
And I will comfort you
Like a mother while you rest
The tide can change so fast,
But I will stay
The same through the past,
The same in future, same today
I am constant; I am near
I am peace that shatters all your secret fears
I am holy; I am wise
I’m the only one who knows your heart’s desires
Your heart’s desires
Oh weary, tired and worn,
Let out your sighs
And drop that heavy load you hold
Cause Mine is light
I know you through and through;
There’s no need to hide
I want to show you love
That is deep and high and wide
I am constant; I am near
I am peace that shatters all your secret fears
I am holy; I am wise
I’m the only one who knows your heart’s desires
Your heart’s desires
Oh gently lay your head
Upon my chest
And I will comfort you
Like a mother while you rest
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