Monthly Archives: October 2011

Halloween

Erin is spending Halloween night in Davis.  She and Steve met at a Halloween party in Sacramento.  That was 14 years ago.

31Oct2011 Early

Apologies regarding the decor online. I am trying a new base so I can see better. Forgive me. It may change of a bit over the next week or so!

New Opinions

Normally, immediately after an MRI, Erin sends an email to Dr. Scott Peak in Redwood City, presently Kaiser’s only neuro-oncologist in Northern California, and to Dr. Chen, the radiological oncologist who supervised her radiation therapy 2 years ago in Rancho Cordova.  She notifies them that she has had an MRI.

So, for the last couple of days I had been asking her if she had written them, and she wasn’t sure if she had.  She had been so tired and depressed that she hadn’t worried about it. Finally, last night I suggested we look on her Kaiser website to see if she had written them.  She had, and they had both responded Thursday. Peak thought that the small change might be due to the slice angle and Chen began his message with “Good news”. Both thought that she should continue on the Avastin and Irinotecan at least until the next MRI in 8 weeks.

 So, Erin wrote Steve last night and asked him to come up today with the boys. Erin cooked crepes for all of us using a recipe I got from a roomate back in 1962.  Steve wrote Dr. Adams, the medical oncologist, asking him to resume the infusions of Avastin and Irinotecan. So, we assume that she will have the infusion within the next couple of days.  Her spirits are much better!

Barbara

30Oct2011 Lesson Learned

Warning: Not Doing Much Editing. Too Lazy.

I was so negative on Wednesday, Thursday and Friday that I missed too much. It is amazing that I missed two doctors that I respect and …respect! That I missed their post to me, a stupid move. Lesson learned. Leason Learned.

 

The brain men think I should stay where I am.  While I was in the pit of stupidity, two cancer men are more familiar with my head. These two, out voted for staying was. What I did not do was to see it. I mussed their attention and their opinion.

 

In all names of cancer, there are stirs of magic. Frankly, in life we make decision daily. I let my emotion cost me time. Fortunately, not much and a mom and my love moved ahead.

And I also was mistaking my huge mistake. I let sadness over one perspective guide my heart/freaked out zone. Steve and Babs (Babs, she is so amazing in anything analytical) realized that I had missed the words. My mom spent a lost of time figuring what I had missed and then boom: gets me back on track.

 

So starting next week I am (and my army) are back to get the stuff I was getting before. The fact is doctors are amazing, but they are opinion. And in I feel fortunate that I have so much to turn to for opinion. At least this time, I will follow those that seem to see a different of my head. There are possibility. There are for all.

 

So  for now, I will take a look at this current path and I will watch. And then, I will cure the heck out of it. I get to be a positive person. And kill that crap in my head. Now yes, the damage against my head is teaching, but I am learning. I bump people whom I cannot see well. But the kids love me and I married well. I get to kiss my kids and the love of my soul. And parents I have that are strong and well, strong. So from there, it just does like a good life.

30Oct2011 Going to Write More In A Bit

Business is interesting. I will write it more, but it seems things are not as negative nor doomed. Lesson less: don’t sleepy. More on that later!

29Oct2011 In Denial; Zoo

I find I am denial. In about 10 days I will go back to UCSF and learn something new. I have to tell me yes it will work. I am not ready and and I think sometimes in denial as a point.

I’ll try to write later. But Friday was the moment where evey medical person saod this is not working, so may be we can a new solution.

I spent most of my day in denial. At the zoo. Some days, Sitting in the sun gave me beautty. For now, that is what I am going to do with my be a world in denial.

No More Infusions

We were preparing to go to Erin’s 9:15 am appt with Dr. Adams this morning, when I got a phone call from Steve.  He had talked to Dr. Jennifer Clarke at UCSF yesterday and he tried to call Erin yesterday, but she was sleeping so heavily, she did not answer the phone. 

Dr. Clarke said that the tumor seems to have grown about 1/2 cm, so the infusion of Irinotecan and Avastin is not working.  Dr. Clarke and Dr. Adams conferred and agreed on a plan of action.  There is a trial that is open that involves stopping the Avastin and Irinotecan immediately.  It is a phase 1 trial which means the drug hasn’t been tested for brain tumors at all, though it has proved successful for other cancers.  It is a pill called CC115.

When we saw Dr. Adams, he had cancelled today’s infusions.  Erin has to be off of Avastin for at least another 2 weeks before she can begin the new trial.  (Avastin cuts down the blood supply to vessels.) 

I asked Dr. Adams why the steroids cut down on swelling in the brain due to the tumor, yet Erin’s face is swollen.  He said that the face is not swollen: the steroids actually lay down layers of fat!  And, of course they make her ravenous and she has eaten more lately.  If she didn’t take the steroids, she could have a stroke, etc.

Dr. Adams said again that the results of the MRI are not so important as the fact that Erin’s clinical presentation is worse than when he saw her 4 weeks ago. Clark thinks that in the last 48 hours, she has become more wobbly and tired. He carried her tote bag, and I registered her this morning. But, this afternoon, she took care of everything when we picked up her glasses.

After the appt,  I headed to bridge and Clark and Erin to Mel’s for omelets. 

Erin and I just picked up her new glasses which have a stronger prism. They seem fuzzy now, but hopefully, they help her see the computer better.

I am eating microwaved tilapia and spinach before heading out to bridge again (this time with brother Bob). Clark, Erin, Colleen, Wheeler, and his friend are having pizza delivered and some are watching the final game of the World Series.

Barbara

Slept All Day

Erin slept most of the day today.  She said she is feeling very blue.

Tomorrow is an oncology appt. at Kaiser here, followed by the Irinotecan and Avastin infusions.

She has not heard any more from UCSF.

Barbara

26Oct2011

Watch Out For My Attitude Today. I  apologies. I am not checking for errors.

I had a good day. A great day. Shan and I did our usual running around stuff. I got my stuff from Kaiser, sent it to SF,  and they are seeing what their next plan.

What is there? I don’t have pain. I have issues due the tumor wondering my head; I am so mad.

I had a good day, then boom. I think the physicians are doing to see everything they can. But my head is telling us enough.

So I am pissed off. I left my phone either in Shan’s car at Colleen’s place around the corner. May it is meant to be to leave my phone.

Wow. Stay away from me. I may be screaming.

25Oct2011

 

Reason’s I like Kaiser is that I did a MRI tonight. I slept. I love being jalf asleep. I swear, Babs napped why slept at the same time.

I’ll know more on Monday, it will be relief where things are. This week is on Day 2 and I feel full being ready. If the current stuff is not working, then I move to experiments. But suddenly, I have with what I am doing. If I am lying, that is OK. We all do what we must do. But I like the idea of seeing that the damage in my head is yelling, “get out of my way,”

On another topic, is that most of my days have being sorting out all the stuff we have not done. It takes my current brain a long, long time. But that is better than nothing!

 

I am too sleepy to make much so late. I am just tired and need sleep. Sad, that is based on a small amount of going through files. Man that seems harder than is should be….

Apologies. My mom would edit hers. I am simply sleepy.

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