Monthly Archives: August 2011

I Forgot

This sounds horrible. My mom and I were both sick last week. Mine is lasting longer. I like the idea of thinking I have a nasty cold with running nose and not cancer permanently in my head.

Mom was still sick on Monday. I am going to think I feel better after sleeping the sick off better. Funny how I keep forgetting I have a cold and just put it in the pile of negative in the corner. I need to dream that the way I feel is worse and will be better in a week or so. And then fighting cancer will just be fighting cancer. And the fob in my head is officially a cold.

Some things help mentally.

This May Be Too Much…

I hit a bad wall today. I was set up to meet with Dr. Williams, the neurosurgeon whom I have liked from long ago (the past 2 years). But it was hard to keep it together. Surgeons have different goals and different statistics to look at and I cannot begrudge this. But then, how much of the post surgery do they truly see? I think Williams is probably one of the kindest fellows in his industry. Yet for me…too much negative, not enough hope. And it just pushed me too low.

Statistically, Williams put me past the mark where I should have been. Sigh. Now I am…average.

Years ago people died fast with brain tumors. And yes, it is still in that era. And I am crying more now that I had the first year. I am scared. I am resentful. For the first time, for the last few months there have been pieces of crap sitting around my brain. And I am mad. I am sad. Then I will be mad. The feelings shift.

Now, I am in a chance to shift. Now is the chance to put the kids in school and look to see what other things I can try out there. I have a lot of reading to do. I have chances to see the latest and experimental things we can try. When I got the treatments the first time around, it was treating an empty brain. Now there is material and I am mad. I’ll be sad in a few moments, I am sure. But when I am mad, I am mad.

For now, I am hoping that I will be able to stay on the current path of Avastin and Irinotecan. But it is time to get the next steps looked into, slowly, but yes. I had shoved things aside for the time it was appropriate. Alas, it is time to balance both things. The positive survives and the traditional end.

I will get most of it out here on the death part…my view (not those who are left). I believe in a higher power. I believe that I get to harass people later in life. I believe that I have a cousin Jim who showed me the way long ago (still not the beer man he is, but we can argue about that later). I believe that the family I was so fortunate to be a part of since 1971 will always be part of my existence. I believe I get to spend time with those who went before. Jim was an incredible cook. I believe I will listen as he teaches me with everyone around.

I guess the best thing to say is that I am of fortune. I believe in today. I believe in the dragon-fly that Jim sends around. And I believe that today I get to fight it.

What I need to work on more is laying out the future in both directions. Steve can see both futures ahead and it must be one of the most difficult plans to see. Growing up, he did not have what I did. I am so glad that he knows what he has. He knows the families and friends that will be there for him. Knowing is not the same as feeling. In the mean time, he has to juggle work, being worried about me, the boys, his folks, the list goes on and on. I do believe that the next era will be the hardest. He does not read this site too much. And I think that is good, at the end of the day. He is always fine with what I write, but the silent support is what he needs. He gets worried now when I am not loud. That makes him worry.

Please forgive this one. I just wanted to get out the emotion today. Now. I want to be able to go into war mode and not victim mode. This page lets me vent to the page and free the love of my life.

The next few days tell us what one point of medicine has. As that calms, I have to approach a different approaches are there. We have to do the practical plan, then push in a different world.

Watch Out. Sappy. OK, Not Quite.

I cut down on the decadron (the steroid). I feel like I am back to the world.

My mom is sick from something I had been carrying around for 10 days. We seem to be trading off rest for child care. My mom. Sigh.

I have been struggling a great deal the last few nights. It is hard to not be able to write to the electronic page. It is a lesson in that it is time to find ways to communicate. I can easily write but I have not gone past that point. And right now, as the evening pills climb in, the though process gets lost. Not all bad. But still not the plan I had.

Let me get out what I can. I am at a less glamorous cancer free where I was a year ago. And yet…and yet…I feel strong. I feel empowered. I feel blessed. Yea yea, sappy.

Moving here was the wisest decision that we made. The friends we left behind in the South Bay are still there and I know I could call any day. I do feel as though the people, non related, that I can call is reliable and strong. I truly feel like I am simply taken care watched out for.

So I have had too much drugs to write much, but I am simply grateful. My mom and aunt were here today and stress gets aside.

I am sorry, I cannot write clearly due to the Hydrocodone. The side effect of Avastin is muscle pain. The irony…be more active, not less. Maybe tomorrow, as the cold slowly leaves, I will simply walk more. Today, I walked about 0.80 miles and I could sleep for hours.

So I tried to write. Alas, too sleepy and too drugged. I would write the list of things that have helped, but I would not finish any time soon. I guess the best thing to say (at the moment) is that the women today of whom I saw several, know the drama and wisely just pick up the conversations depending on theme. And just like that, I felt stronger.

Just like that.

I Was Sad.

In general, I feel fortunate. I love in a world with family and friends that I get daily.

And then a hit evening. It is late and I am actually relieved for the cold with is balancing out the challenging of sleeping normal when on steroids. But for some reason, I wake up and I get teary. I don’t live this. I used to be a big crier, but now that I see the power of pushing it away, I try to do so. I think my main sadness tonight is not getting plans for the boys I had thought. Anyone can have sad ends, planing them can really suck.

I really need to plan ahead as to what I want to send to the boys. What do I, specifically, want to show them. In the same moment, I am calm and sad. They have learned already about the family we are so blessed to be a part. But what I cannot do right now is do the part of that. Paco already knows. He loves his 2nd cousins and knows what is there for him in Ireland. But Lemon has no true idea. I think that is the irony of why I get sad. My family is so awesome that anyone will try to help out.

So I guess I need to change my role I have on that one. I need to remember that I did help Steve’s side speak Spanish. I helped. My family has me covered.

Sigh, my family. There is no day we are simply juggling everyone’s challenges and trying to help. That is a good plan to keep things at focused.

This One Will Seem…Odd

I still have this cold. And I forgot. The effects of the treatments, plus being out of it are starting to crack me up. My world is even odder!

Either way, I know the cold is extended due to the weakness fueled by the steroid. Thank goodness this is my last day of high steroids. At least for now…

Life. Silly. But Rich.

Of Coughing.

My mom and I have both been sick all last week. Strange that it makes me feel so calm.

Again: Not being able to read on screen well.

Please forgive the typos. Right now, my vision is great. Then the right eye, will catch up to 20 years of laziness and drop back. The level seems to depend on the distance from the hits of some of the drugs. Right now, the coverage of color of the text is affecting my focus. The irony, I cannot remember how to change the back ground of the screen so the light does not show itself so bright. Man, we all have our weaknesses. Tomorrow is my last day at another lower dosage of  the drug I cannot remember of which I remember the name. A bit lower for another 4 days, then I think I get to go to half a pill. That one, I know I can handle well. I am also up-ing another drug that my other friends have been at the high level before. I think it is working well, I just need to get words down.

Something lovely happened the last 48 hours with my love and my family. Steve and I are feeling stronger and more in love. We seem to not be in fear , but rather to take off into the world of what treatments are there out there. We were not getting along for a few hours this morning, just dealing with the kids. My mom, Clark and my beloved aunt came in and Steve immediately felt taken care of, he remembered what a glorious family I have. And he remembers every time he sees them. He saw them for hours in July, still not enough for that soul. He loves the feeling of the house with anyone from our family around. It makes him feel that there are those he can trust. He worries about me 24/7, but anytime there is a relative, he knows he can trust. It is a true gift. I will say this every day, Steve had always felt at home with my family. Just a gift.

I still cannot well review what I am writing. So I really cannot see words in order yet. I am hoping as I go off the higher dosage (just found it written down: decadron) I hope I can write better. Alas, I can write, but it is terribly challenging to understand words.

One of the gifts I received today was from another glioma girl. She knew I would not be able to read it well. I caught enough for her to bond over the on and off  life of steroids. She knows I won’t be able to get it for another day or two…or maybe with some kind of mellow action. But the note there meant a lot.

We all so lucky to find people who know us for better or for worse. For me, today, my day was filled with love and joy. When Steve saw the group looking after us, just hanging out and playing cards with Paco, he could stop worrying about what we were doing. He loves the notices that my mom is with me. He loves that from the first time he ever joined the family he was protected. Right now, I can think of a few family members that all need a hand of something from all of us. Me, I actually hope to do something for another person in our family. That just seems an honor to help the others for a while.

A Cold

My mom and I both have colds. It is hilarious. I cannot worry about the bigger picture. Is it strange that I am soothed by the cold? I am all woosy!

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