Happy Results
5/13/2004

Every time I write one of these I think I can make it short and sweet, but this time too much has simply happened in a short time. It seems to be becoming a habit every mri, though not one easy to get used to. To summarize Erik's email in my own words: I had an abnormal mri last wednesday. After the mri, I got dressed and had a look at the scan (I fashion myself a pro by now) and the enhancement looked immensely larger than a month and a half ago. Alarmed, my mom and I ran over to try to get my neuro-oncologist to talk to us (we didn't have a real appointment until the next day). Fortunately for me (because the desk insisted that he was far too busy to talk) I persisted and told her I just had a really bad scan showing massive increase and I need to speak with him. He looked at the scan and came out to talk to me. It turns out, my level of understanding mri scans is right on. His imediate reaction was what ever it was I needed surgery, soon. Mind you this is only Wednesday. Thursday we discussed surgery options, because the rapid growth of whatever it was looked very much like tumor regrowth. I suggested another test like we did last month as another surgery didn't sound like a lot of fun. Got an order for an mri spectroscopy and perfusion for Monday at 9:00. We had to fight with insurance for 1 1/2 days, but that's another story. Meanwhile, Erik and I spent much of our past week like we did last month, contemplating our future or lack of, thinking about "life lists" of things I've always wanted to do or see, went to church, start thinking about ancient burial practices, I even went as far as going through old boxes looking for things I would like to give away and to whom I would give them. All pretty morbid stuff, but necessary I felt at the time and still do to an extent. I had the mri spect/perfusion on Monday and then met with my surgeon on Wednesday, a 3:20 pm appointment. Didn't get to see him until 4:40 pm, which felt like an eternity. Interestingly enough, because of the rapid growth I mentioned above, he thought he was coming in with bad news as well until he received the MRI spec/perfusion report 5 minutes before he came to see us. He walk in and just asked me calmly if I have had any discomfort lately and I of course tell him, anxiety, depression, malaise, too much sleep, all attributed to the stress of waiting. He goes on to say, aside from any of the recent developments, how do you feel. I told him about a seizure I had on the way to the hospital that he thought was likely caused by the stress. So here I am answering questions that I didn't have answers to, I just wanted to know what the spect/perfusion said. We were sitting in a small office room huddled around a small round table. He is sitting directly across from me, Erik to my left and my mom to my right. My wonderful surgeon finally tells me the mri spect/perfusion radiologist (the specialist who rights the reports) says unequivicably (sp) no tumor. Absolutely no doubt that this is radiation damage (necrosis) and not tumor. We just sat there for a about what seemed 10 seconds and he kept speaking, but I wasn't listening, I just stared at him dropped my head into my hand and said thank you God, shaking. After that I think I asked him to tell me the result again couple times. With that, on to a 6 week course of steriods and that should do the trick to get the swelling down and I should be okay. Will have another mri in 6 weeks as well for follow-up.

Feel like a new lease on life. We have a few things lined up. We are going to Dirty Nellies this Saturaday in Palatine for a Brain Tumor FundRaiser, if anyone is interested or knows anyone out that way please join us. Then off to Oregon and Washington state for our anniversery (wedding) and to visit friends. Plan on seeing the coast then over to the mountains from May 29-June 5. June 6th is the Cancer Walk in Chicago. It's only 5 miles, no race, no sponsor, just your enterence fee of $20, not bad. You can bring children and pet as well. I think we are going to bring Revy, our dog. I will post more info if anyone is interested, I will also try to make some t-shirts that say something like "please support brain cancer". Then we're on to Puerto Rico June 30 - July 11. I am also starting to hammer out a plan to ease back into a working mode! It'll be nice to revisit that side of my brain that hasn't had much attention since surgery.

Lastly and most awesomely, my mom wrote the Sun Times about Brain Tumor Awareness Week and my condition. They printed her letter in the letter to the editer last week (I have the link somewhere and will post it next time). She got a 1/4 page!! It was titled something like "Make Brain Cancer Awareness a Priority" (stating that the gray ribbon goes largely unnoticed in comparision to the pink ribbon of breast cancer or the red ribbon of lung(?) cancer). A wonderful story that came out of that article. A woman called the paper and asked if they would have my mother call her. She is the aunt of a girl (29) who had surgery two weeks after mine and was diagnosed with GBM. Her niece lives in the area and we are going to try to get together or at least talk on the phone. Another wonderful story that came out of the article is that my mom's co-workers (of which there are very many) went to the store, bought gray ribbon, made some brain cancer ribbons themselves and are selling them. They put up a poster with the article along with a picture of Erik and I from the wedding. All the proceeds from their fundraiser go to the ABTA in my name. Isn't that clever?? It's inspired me to think about doing the same on my website, or if anyone would like to talk about the possibility of arranging something like that at their work, that would be very welcomed and wonderful. Who knows, all I can do is ask!!:) The only way for a cure, or in my case something that can keep it at bay for a long long time, is research. Research won't happen if organizations like the ABTA (especially the ABTA) don't get funding. No funding no progress.

Perhaps some time in the fall I can work on putting a fundraiser together...anyone interested in "brain" storming???

Anyway, knew it would be long. Don't know if it's the steriods keeping me up into the wee hours writing or if it's this blessing I've been given. This new sense of living couldn't have come at a better time. I've got a lot of living to do, people to visit, places to see, and money to raise!!

I'll write again very soon!

Living and loving the moment,
lori

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